## Communications Materials

###  {#section .unnumbered}

*Contents: This appendix provides the communications plan for the
131I/NCI Communications Project (I.1) , information pertaining to the
January 2000 NCI/CDC workshop entitled "I-131 Fallout from NTS:
Informing the Public" (I.2--I.5), a description of tools typically
utilized for communications planning materials (I.6), and a description
of the campaign implementation and evaluation (I.7).* *Although the
campaign is ongoing, these materials are provided for historical
reference.*

### I.1 Outline for I-131 Communications Plan {#i.1-outline-for-i-131-communications-plan .unnumbered}

#### I.1.1 Situation Analysis {#i.1.1-situation-analysis .unnumbered}

-   In the 1950s and early 1960s, the United States Government conducted
    almost 100 atmospheric nuclear bomb tests in the Nevada Test Site
    (NTS), releasing iodine-131 (I-131) and other radionuclides into the
    atmosphere. In the same period, there were about a dozen underground
    tests where some atmospheric release of radioactive material was
    possible. Most of the current scientific information on the subject
    relates to I-131, which concentrates in the thyroid gland and may be
    linked to thyroid cancer and other thyroid disorders. Although I-131
    released from the NTS has decayed and is no longer present in the
    environment, at the time of testing, radioactivity was deposited on
    soil and vegetation throughout the country. Doses of radiation
    varied widely according to geographic area based on wind and
    rainfall patterns. Some areas received minimal exposure, while
    others, sometimes far from the test sites, received higher radiation
    exposures. After cows and goats consumed the contaminated
    vegetation, I-131 appeared in the milk produced by those animals.

-   Exposure to I-131 may increase the risk of thyroid cancer and other
    thyroid disorders. People who drank milk, particularly children, are
    estimated to have received higher than average doses of I-131 from
    the contaminated milk which have been associated with a higher risk
    for thyroid cancer and other thyroid diseases. Those who were or may
    have been exposed to I-131 should be informed of their exposure and
    the potential health effects so that they can consult with a health
    care provider for monitoring of their thyroid and possible
    screening. Those who do not have a health care provider should be
    informed about existing resources that may be able to assist them.
    Although a diagnosis of thyroid cancer and other non-cancerous
    conditions must be treated seriously, thyroid cancer is relatively
    uncommon and is not normally fatal, particularly with early
    detection and proper treatment.

-   Congress mandated that the National Cancer Institute (NCI) assess
    the public health impact of the NTS on the American people. Since
    the publication of NCI's report on estimated exposures and thyroid
    doses in 1997, an Institute of Medicine committee reviewed and
    assessed the validity of the report and made recommendations to the
    government on how to communicate with the public aboutI-131 exposure
    from the NTS.

-   NCI has taken the lead role for the Federal Government in the
    development of a communications plan related to I-131 fallout
    exposure from NTS. In January 2000, a communications workshop --
    sponsored by NCI and the Centers for Disease Control (CDC) -- was
    held to gather input from citizens, consumer advocates, physicians,
    scientists, health department representatives, and other government
    officials on the best ways to inform the public and health
    professionals about I-131 exposure. One outcome of the workshop was
    the formation of a Communications Development Group (CDG), made up
    of representatives from community groups, health professionals, and
    concerned citizens, to offer guidance to NCI staff with the
    development of an NTS I-131 communications plan.

-   Although the current communications plan focuses on I-131 exposure
    from NTS, there are other sources of I-131 exposures in specific
    areas around the country. There are four additional nuclear reactor
    sites in the United States that released I-131 into the atmosphere
    that may have resulted in multiple I-131 exposures to nearby
    communities. These sites include the following: Hanford Nuclear
    Reservation in Richmond, Washington; Idaho National Engineering and
    Environmental Laboratory in Idaho Falls, Idaho; Oak Ridge National
    Laboratory in Oak Ridge, Tennessee; and Savannah River Site in
    Aiken, South Carolina. There is a level of uncertainty associated
    with the health effects from multiple exposures to I-131, although
    it is likely that the health impact of multiple exposures may be
    more significant than a single dose exposure. In order to address
    this issue, the current plan will include messages that individuals
    who lived in and around the aforementioned areas may have received
    exposure to I-131 from NTS as well as from other sources, and that
    these multiple I-131 exposures may pose resultant health risks.

-   The feasibility of collecting scientific information about the
    health effects from global fallout and the levels of exposure from
    other radionuclides is currently being assessed. If there is
    agreement on public health outreach concerning multiple I-131
    exposures and the levels of exposure from other radionuclides, this
    communications planning process may be used as a blueprint for
    future communications efforts.

#### I.1.2 Challenges and Opportunities {#i.1.2-challenges-and-opportunities .unnumbered}

Challenges

-   The credibility of the Federal Government, as a whole, has been
    compromised on the radiation issue. Therefore, the Federal
    Government should work with third parties in providing informational
    messages. In addition, credibility issues vary across government
    agencies and according to individuals' experiences with particular
    agencies on issues related to radiation. The general public is
    largely unaware of radiation exposure that occurred nearly 50 years
    ago and may experience a variety of emotions when they learn about
    potential exposure risks. Some people may be justifiably concerned
    about their exposure and the risks that result from it; others may
    be unnecessarily frightened; some may question why the government
    conducted the tests, exposing the public to I-131, while others may
    not have any interest in the issue. For those who have suffered from
    thyroid illness or have loved ones who have suffered, the new
    information may also create a sense of closure and provide some
    answers. Balancing the need to inform people while creating an
    appropriate level of concern with the possibility of creating a
    significant level of unwarranted anxiety will be an ethical and
    communications challenge.

-   The I-131 issue is competing with many other health issues that may
    be perceived to be more current and pressing among health care
    providers and members of the general public.

-   I-131 exposure and the potential health implications are complex
    issues marked by scientific and medical uncertainties, and are
    difficult to communicate to the public in non-scientific terms.
    Communications about this issue must include honest descriptions of
    the uncertainties about exposure and potential doses, and honest
    descriptions of uncertainties related to assessing past exposure and
    potential doses received. Such communication can help build trust or
    may exacerbate a lack of trust if it appears to "waffle" on the
    uncertainties. In addition, because these exposures were
    *involuntary* and not fully disclosed for many years, reactions to
    related information will likely be more negative. Therefore, risk
    communication principles should be employed throughout the program.

-   Communications efforts involving American Indian audiences will have
    to be sensitive to a heightened distrust of governmental messages
    and must be coordinated with other government agencies based on the
    unique government-to-government relationship with American Indian
    tribes.

Opportunities

-   There are strong citizen networks and health professional
    organizations in the communities that may support implementation of
    specific strategies in a comprehensive communications plan. These
    networks include advocacy groups, public health networks, and
    Internet communications networks.

-   CDG involvement will ensure that the communications plan is thorough
    and directed to the most appropriate audiences. The CDG can also
    help brainstorm possible organizational structures through which the
    messages can be disseminated.

-   NCI has received a positive response to its efforts to involve the
    advocacy and the health professional communities at the earliest
    possible stages in the development of communications surrounding
    I-131.

-   Other agencies and organizations are involved in addressing I-131
    exposure issues. For example, ACERER (Advisory Committee for
    Energy-Related Epidemiological Research) held a meeting to hear
    public input on the need for thyroid screening for those exposed to
    I-131 from the NTS in June 2000.

-   The research group led by Annette O'Connor has expressed an interest
    in developing a screening decision aid that may be one tool in the
    implementation of this communications plan. One activity of the
    plan, therefore, could be to work with this group to create and
    review such a tool. The feasibility will be explored for developing
    a decision tree that could help those without health insurance find
    existing programs that might assist them.

#### I.1.3 Communication Goals {#i.1.3-communication-goals .unnumbered}

-   Individuals who may have been exposed to I-131 radiation from the
    NTS will seek the appropriate guidance of health care providers
    about the potential health effects of exposure and what can be done
    to address these effects.

-   Healthcare providers will understand the risk of I-131 exposure and
    the potential health effects and will be able to advise patients
    regarding their individual health status, potential risks, and
    options.

#### I.1.4 Communication Objectives {#i.1.4-communication-objectives .unnumbered}

-   To communicate to the intended audiences understandable information
    about the release of I-131 from the NTS, the potential health
    effects of exposure, and what exposed individuals can do about those
    effects.

-   To engage intended audiences in the issue and encourage individuals
    who are concerned about I-131 exposure to consult with a health care
    provider or other sources of health services.

-   To inform health care professionals about the possible health
    effects of I-131 exposure and to provide information to assist them
    in working with patients who are concerned about exposure.

#### I.1.5 Intended Audiences {#i.1.5-intended-audiences .unnumbered}

The Public

-   Individuals aged 40 and older, particularly those who lived in areas
    of highest exposure and consumed milk, with special emphasis on
    underserved populations, including minority groups and those with
    limited access to the health care delivery system.

Health Care Providers

-   Primary care providers

-   Thyroidologists

-   Obstetricians and gynecologists

-   Managed care organizations

-   Nurses and nurse practitioners

-   Providers in community health centers, migrant health clinics, and
    the Indian Health Service

-   Psychologists and psychiatrists

Others

-   Social workers

-   Advocacy and support groups

-   Community-based networks

-   Schools of Public Health

I.1.6 Channels

> Members of the public, including those who may be at higher risk, may
> be reached through a variety of channels, including:

-   Intermediary organizations such as environmental advocacy groups and
    downwinders

-   Community groups (especially in high-risk locations)

-   Health care providers (especially in high-risk locations)

-   State and local health departments, sliding scale clinics, community
    health centers, and migrant health clinics

-   Bureau of Primary Care, Health Resources and Services Administration
    (HRSA)

-   Internet (NCI Web site and primary Internet health portals)

-   NCI's Cancer Information Service (CIS)

-   Health-related federal agencies, e.g., Public Health Service, Indian
    Health Service, CDC, Veterans Administration

-   American Indian Tribal Governments through collaboration and support
    of the Indian Health Service and other federal agencies

-   Churches and other religious organizations

How Health Care Providers May be Reached

-   Intermediary groups such as professional associations and their
    media (newsletters, journals, etc.)

-   Professional meetings and continuing education

-   Internet

-   Health-related federal agencies, e.g., Public Health Service, Indian
    Health Service, CDC, Veterans Administration, Health Care Financing
    Administration

#### I.1.7 Core Messages {#i.1.7-core-messages .unnumbered}

The Public

-   Brief explanation that everyone in the United States during the time
    of the tests was exposed to some level of I-131 and depending on
    individual risk factors, is at varying health risk; description of
    potential health effects and their symptoms; and how to determine
    exposure. Messages should also acknowledge that multiple I-131
    exposures and exposure from other radionuclides were possible,
    although less is understood about these other exposures.

-   Recommendation to consult with a health care provider to determine
    if any steps should be taken to monitor and protect their health.
    (Information will be available to guide people without health
    insurance to existing programs that may assist them.)

Healthcare Providers and Others

-   Brief explanation that everyone in the United States during the time
    of the tests was exposed to some level of I-131 and depending on
    individual risk factors, is at varying health risk; description of
    health effects and their symptoms; and how to determine exposure.

-   Suggestions for counseling patients with concerns about the health
    effects associated with I-131 exposure.

-   Suggestions for assessing appropriate health precautions/monitoring.

-   Resources and references.

#### I.1.8 Message Tone {#i.1.8-message-tone .unnumbered}

-   Compelling, motivating; not frightening

-   Empowering audiences to address their concerns

-   Credible, truthful, engaging

-   Not paternalistic

-   Compassionate

#### I.1.9 Message Development Process {#i.1.9-message-development-process .unnumbered}

> Message concepts were developed and tested with members of the
> intended audiences to determine *how* to deliver the messages in the
> most useful way (after it is determined *what* to say). Concept
> testing[^1] is the type of research recommended in communications
> planning after exploratory focus groups and before material
> pretesting. A creative team then analyzed the responses to determine
> how messages would be crafted so that audiences would understand and
> act upon them.
>
> Once materials were created, they were pretested with appropriate
> audiences, including underserved individuals without access to health
> providers.

#### I.1.10 Strategies and Tactics {#i.1.10-strategies-and-tactics .unnumbered}

*Create and activate existing community and grassroots networks, along
with state and local health departments, to deliver program messages to
identified audiences.*

The NCI completed the following:

-   Identified and created a contact list of potential organizations to
    include as a network for program implementation.

-   Developed informational materials to be used at the local level by
    organizations already involved with radiation exposure issues and
    those committed to public health, including local health
    departments. By creating turnkey materials and kits, messages were
    controlled and consistent. Community groups were encouraged to refer
    individuals to the Cancer Information Service (CIS) for additional
    information, answers to questions, and referrals to health provider
    services and other community services for assistance. Final
    materials included:

    -   **Get the Facts About Exposure to I-131 Radiation\--**This
        general information brochure provides information about the
        Nevada tests and identifies individuals at particular risk.

    -   **Making Choices: Screening for Thyroid Disease\*\--**This
        decision aid workbook/brochure is for individuals concerned
        about their exposure to I-131 from fallout (This is based on
        decision support format of the Ottawa Health Decision Center at
        the University of Ottawa and Ottawa Health Research Institute,
        Ontario, Canada)

    -   **Radioactive Iodine (I-131) and Thyroid Cancer\*\--**This flip
        chart, designed for use in small groups of up to 10 people,
        addresses concerns specific to Native Americans.

    -   I-131 Website (www.cancer.gov/i131)

    -   Tools for partners\* ("swiss cheese" press release, promotional
        brochure, web blurb)

> Provided technical assistance in communicating information about I-131
> and the potential health effects to public health departments in areas
> of highest exposure.
>
> Developed materials to enable health professionals to respond to
> patient concerns about potential I-131 exposure and to address the
> issue with patients who may have received higher exposure**.** These
> materials are noted with a \* above**.**

-   Worked with health professional organizations and their members to
    provide information to patients who may be concerned about their
    exposure or who may be unaware, yet subject to health complications
    from their exposure.

> Worked with health care providers through their professional
> organizations (such as medical societies) to raise their awareness of
> the issue and inform them about materials available for their use.
> 1-800 phone numbers and Web addresses were highlighted to help health
> care providers ask for or obtain materials.

**Enable audiences to access materials through multiple channels so that
information is presented to them proactively but is also accessible upon
demand.**

-   Developed an "I-131 web page" on the NCI Web site
    (www.cancer.gov/i131). The page offers sections for consumers and
    health professionals. The decision aid and the dose/risk calculator
    are also on the website.

-   Worked with key health information portals targeting health
    professionals and consumers so that they can either provide a link
    to the NCI website or post the I-131 materials on their own site.

-   Provided information and training on the topic to the CIS regional
    offices, which respond to telephone inquiries from consumers and
    professionals and conduct community outreach on specific
    cancer-related issues. (Note: Individuals who do not have easy
    access to the Internet are directed to the CIS which can provide
    them with information about the tests at the NTS and the potential
    exposures and possible subsequent health effects. The CIS is also a
    resource for referrals to other services, such as counseling, for
    people who learn that they have cancer or other specified health
    conditions, such as problems caused by exposure to I-131.)

**Collaborate with other federal agencies, components of the government
and other organizations to achieve consistent communication about I-131
and the potential health effects and demonstrate the effectiveness of
the planning process model.**

-   NCI worked with key federal partners, including the Centers for
    Disease Control and Prevention, the Agency for Toxic Substances and
    Disease Registry, the Department of Defense, the Veterans
    Administration, the Department of Energy, the Environmental
    Protection Agency, the Indian Health Service, Bureau of Primary
    Health Care, and others. This effort was made to ensure consistent,
    inter-agency communication and actions on related radiation issues
    and facilitate more information sharing across agencies. (It is not
    foreseen that these agencies will help facilitate the specific
    activities described in this plan.)

-   Coordinated and collaborated with Canadian organizations on the
    decision aid.

**Use a phased approach to build momentum around the message and an
opportunity for on-going evaluation.**

> The campaign implementation and evaluation is outlined on Page I-124.

**Addendum A**

Cancer Information Service's Role in I-131 Communication Plan

Materials Distribution

-   The I-131 materials are available from the Publication Ordering
    Service and on the Publications Locator on the Web.

-   Callers to the CIS are offered appropriate materials.

Information Calls to 1-800-4-CANCER

-   CIS is now using information prepared by NCI to answer inquiries
    form the public.

-   CIS makes referrals to health care professionals according to its
    current referral policy. (Note: CIS does not make referrals to
    individual physicians, only to NCI sponsored programs.)

-   CIS does not use any of the modeling techniques to perform risk
    assessments for callers.

Referrals to Other Services

-   CIS has referral information for cancer screening, treatment, pain,
    and indigent care. CIS refers to other community/national
    organizations for support services; CIS does not maintain referrals
    for support groups or other local counseling services. If other
    specific referrals are necessary for this project, they would need
    to be provided to CIS.

Outreach

-   The CIS Partnership Program distributes I-131 materials to the
    state, regional, and community/local organizations it routinely
    works with.

**Addendum B**

Other Suggestions from the CDG

> This document includes issues that cannot be addressed within the
> scope of the NTS I-131 Communications Plan, but will be shared with
> other governmental agencies.

-   Develop a pilot project for addressing multiple exposures to I-131
    as well as exposure to other radionuclides. This communications plan
    focuses on exposure to I-131 from NTS, but may be used as a model
    for future efforts, if deemed scientifically feasible and
    appropriate.

-   Provide cost reimbursement for screening and/or medical costs
    associated with exposure to I-131 from the NTS, exposure to other
    radionuclides from NTS, and exposures to I-131 and other
    radionuclides from multiple sources, including "global" nuclear
    testing and radiation releases from United States nuclear
    facilities.

-   Develop an Information Resource Center similar to the Hanford Health
    Information Center with a 1-800 number, Health Information Network,
    and On-line Exposure Health Database. This would enable people to
    get information, get connected, and get help accessing ancillary
    services, such as support and counseling.

-   Develop an NTS Fallout Health Effects Subcommittee and an NTS
    Fallout Health Information Network originally proposed in Utah House
    Concurrent Resolution 10.

-   Provide training or "train the trainer" sessions on exposure and
    screening to enhance community-based efforts.

-   Provide counseling/support services (or cost reimbursement) for
    people who learn that their health has been affected by I-131 from
    NTS.

-   Incorporate new ACERER recommendations into the plan once they are
    formally recommended and approved by the Department of Health and
    Human Services.

### I.2 Workshop Agenda {#i.2-workshop-agenda .unnumbered}

*(see next page)*

**Workshop Agenda**

**January 19-21, 2000**

![](media/image1.jpeg){width="1.4479166666666667in" height="1.03125in"}

***Wednesday, January 19 -- Briefing Day***

  ----------------- ------------------------------ -----------------------
  9:00 a.m. -- 9:30 Arrival and Check-In           
  a.m.                                             

                                                   

  ***Session A***                                  

  9:30 a.m. --      Opening Session                
  10:00 a.m.                                       

                    Welcome and Charge to Group    Alan Rabson, M.D.

                                                   Mike Sage, M.P.H.

                    Ground Rules and Introductions Denise Cavanaugh,
                                                   Facilitator

                                                   

  ***Session B***                                  

  10:00 a.m. --     Broad Overview and History     Mark Epstein, Moderator
  10:45 a.m.                                       

                    Brief NTS History              Mark Epstein

                    A Citizen's Perspective        Trisha Pritikin, Esq.,
                                                   M.D., O.T.R.

                    IOM Report                     Robert Lawrence, M.D.

                                                   

  10:45 a.m. --     Break                          
  11:00 a.m.                                       

                                                   

  ***Session C***                                  

  11:00 a.m. --     The Science of I-131 Exposure  
  12:30 p.m.        and Health                     

                                                   

                    1\. What Can Science Tell Us   Charles Land, Ph.D.
                    About the Health Risks of      
                    I131?                          

                                                   

                    2\. What I-131 Doses Did       Steve Simon, Ph.D.
                    People Receive From NTS        
                    Fallout?                       

                                                   

                    3\. Reflections From and       Owen Hoffman, Ph.D.
                    Independent Scientist on the   
                    Science of I-131.              

                                                   

  12:30 p.m. --     Lunch                          
  1:45 p.m.                                        

                                                   

  ***Session D***                                  

  1:45 p.m. -- 2:15 Public Health Communications   Elaine Arkin
  p.m.              Challenge                      

                                                   

  ***Session E***                                  

  2:15 p.m. -- 3:00 Table Discussions              Denise Cavanaugh
  p.m.                                             

                                                   

  3:00 p.m. -- 3:15 Break                          
  p.m.                                             
  ----------------- ------------------------------ -----------------------

Wednesday, January 19 -- Briefing Day (Continued)

+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| ***Session     |                             |                      |
| F***           |                             |                      |
+----------------+-----------------------------+----------------------+
| 3:15 p.m. --   | Communications Challenge:   |                      |
| 5:15 p.m.      | Group Discussions           |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | 1\. Interest Group          |                      |
|                | Perspectives                |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | > Moderator                 | Seth Tuler           |
+----------------+-----------------------------+----------------------+
|                | > State/Local Advocacy      | J. Truman            |
|                | > Organization              |                      |
+----------------+-----------------------------+----------------------+
|                | > National Advocacy         | Maureen Eldredge     |
|                | > Organization              |                      |
+----------------+-----------------------------+----------------------+
|                | > Physician Advocate        | Tim Takaro, M.D.     |
+----------------+-----------------------------+----------------------+
|                | > Native American           | Robert Holden        |
+----------------+-----------------------------+----------------------+
|                | > Ground Zero               | Lincoln Grahlfs,     |
|                |                             | Ph.D.                |
+----------------+-----------------------------+----------------------+
|                | > Consumer Organization     | Jean Halloran        |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | 2\. Health Provider:        |                      |
|                | Channels and Gatekeepers    |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | > Moderator                 | Kevin Teale, M.A.    |
+----------------+-----------------------------+----------------------+
|                | > Practitioner              | R. Michael Tuttle,   |
|                |                             | M.D.                 |
+----------------+-----------------------------+----------------------+
|                | > Sliding Scale Clinic      | Delvin Little, M.D.  |
+----------------+-----------------------------+----------------------+
|                | > Medical Specialty Group   | Henry Royal, M.D.    |
+----------------+-----------------------------+----------------------+
|                | > Risk Communicator         | Jim Flynn, Ph.D.     |
+----------------+-----------------------------+----------------------+
|                | > Medical Ethicist          | Kristin              |
|                |                             | Shrader-Frechette,   |
|                |                             | Ph.D.                |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| ***Session     |                             |                      |
| G***           |                             |                      |
+----------------+-----------------------------+----------------------+
| 5:15 p.m. --   | Wrap-Up                     | Denise Cavanaugh     |
| 5:45 p.m.      |                             |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| 5:45 p.m. --   | Break                       |                      |
| 6:30 p.m.      |                             |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| ***Session     |                             |                      |
| H***           |                             |                      |
+----------------+-----------------------------+----------------------+
| 6:30 p.m. --   | Networking Reception and    |                      |
| 9:00 p.m.      | Dinner                      |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+

***Thursday, January 20 -- Discussion Day***

+----------------+-----------------------------+----------------------+
| 7:30 a.m. --   | Continental Breakfast       |                      |
| 8:30 a.m.      |                             |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| ***Session     |                             |                      |
| I***           |                             |                      |
+----------------+-----------------------------+----------------------+
| 8:30 a.m. --   | Summary of Day 1 and Charge | Denise Cavanaugh     |
| 8:45 a.m.      | for Day 2                   |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| ***Session     |                             |                      |
| J***           |                             |                      |
+----------------+-----------------------------+----------------------+
| 8:45 a.m. --   | Screening/Medical           | Denise Cavanaugh     |
| 10:15 a.m.     | Monitoring                  |                      |
+----------------+-----------------------------+----------------------+
|                |                             | Mark Epstein         |
+----------------+-----------------------------+----------------------+
|                |                             | Moderators           |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | 1\. What Recommendations    | Robert Spengler,     |
|                | and Current Programs Exist  | Sc.D.                |
|                | for Screening and           |                      |
|                | Monitoring?                 | R. Michael Tuttle,   |
|                |                             | M.D.                 |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | 2\. Assessing Individual    | Keith Baverstock,    |
|                | Risk                        | Ph.D.                |
+----------------+-----------------------------+----------------------+
|                |                             | Owen Hoffman, Ph.D.  |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | 3\. A Model for Individual  | Valerie Fiset, R.N., |
|                | Decisionmaking              | M.Sc.N.              |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| 10:15 a.m. --  | Break                       |                      |
| 10:30 a.m.     |                             |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| ***Session     |                             |                      |
| K***           |                             |                      |
+----------------+-----------------------------+----------------------+
| 10:30 a.m. --  | Table Discussions:          |                      |
| 12:00 noon     |                             |                      |
+----------------+-----------------------------+----------------------+
|                | What do we know that we can |                      |
|                | use to begin developing     |                      |
|                | messages and defining       |                      |
|                | populations?                |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | What do we need to know to  |                      |
|                | develop and effective       |                      |
|                | campaign?                   |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | What questions should be    |                      |
|                | forward for April screening |                      |
|                | forum?                      |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| 12:00 noon --  | Lunch                       |                      |
| 1:15 p.m.      |                             |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| ***Session     |                             |                      |
| L***           |                             |                      |
+----------------+-----------------------------+----------------------+
| 1:15 p.m. --   | Developing Model Outreach   |                      |
| 3:30 p.m.      |                             |                      |
+----------------+-----------------------------+----------------------+
|                | 1\. Strategies for Message  | Peter Sandman, Ph.D. |
|                | Development An approach to  |                      |
|                | identifying Target          |                      |
|                | audiences                   |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | Considerations for          | Neil Weinstein,      |
|                | developing Science-based    | Ph.D.                |
|                | messages                    |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
|                | 2\. Audiences Research      | Ed Maibach, Ph.D.    |
|                | Results                     |                      |
+----------------+-----------------------------+----------------------+
|                | Presentation of preworkshop |                      |
|                | research                    |                      |
+----------------+-----------------------------+----------------------+
|                |                             |                      |
+----------------+-----------------------------+----------------------+
| 3:30 p.m. --   | Break                       |                      |
| 3:45 p.m.      |                             |                      |
+----------------+-----------------------------+----------------------+

Thursday, January 20 -- Discussion Day (Continued)

+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| ***Session     |                             |                       |
| M***           |                             |                       |
+----------------+-----------------------------+-----------------------+
| 3:45 p.m. --   | Developing Model Outreach   |                       |
| 5:15 p.m.      | (Continued)                 |                       |
+----------------+-----------------------------+-----------------------+
|                | 3\. Table Discussions       | Ed Maibach, Ph.D.,    |
|                |                             | Facilitator           |
+----------------+-----------------------------+-----------------------+
|                | What additional audience    |                       |
|                | research Is needed?         |                       |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| ***Session     |                             |                       |
| N***           |                             |                       |
+----------------+-----------------------------+-----------------------+
| 5:15 p.m.      | Wrap-Up                     | Denise Cavanaugh      |
| --5:45 p.m.    |                             |                       |
+----------------+-----------------------------+-----------------------+
|                | Identify agreements and     |                       |
|                | outstanding issues.         |                       |
+----------------+-----------------------------+-----------------------+
|                | Move forward on a           |                       |
|                | communications plan.        |                       |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
|                | ***Friday, January 21 --    |                       |
|                | Input Day***                |                       |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| 7:30 a.m. --   | Continental Breakfast       |                       |
| 8:30 a.m.      |                             |                       |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| ***Session     |                             |                       |
| O***           |                             |                       |
+----------------+-----------------------------+-----------------------+
| 8:30 a.m. --   | Summary of Day 2 and Charge | Denise Cavanaugh      |
| 9:00 a.m.      | for Day 3                   |                       |
+----------------+-----------------------------+-----------------------+
|                | Review Operating Principles |                       |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| ***Session     |                             |                       |
| P***           |                             |                       |
+----------------+-----------------------------+-----------------------+
| 9:00 a.m. --   | Breakout Session            |                       |
| 11:00          |                             |                       |
+----------------+-----------------------------+-----------------------+
|                | Topic Decided on Thursday   |                       |
|                | Afternoon                   |                       |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| 10:00 a.m. --  | Break                       |                       |
| 10:15 a.m.     |                             |                       |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| ***Session     |                             |                       |
| Q***           |                             |                       |
+----------------+-----------------------------+-----------------------+
| 11:00 a.m. --  | Reports From Breakout       |                       |
| 12:00 noon     | Session Group Reporters     |                       |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| 12:00 noon --  | Lunch                       |                       |
| 1:00 p.m.      |                             |                       |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| ***Session     |                             |                       |
| R***           |                             |                       |
+----------------+-----------------------------+-----------------------+
| 1:00 p.m. --   | Summary                     | James Mathews/Kellie  |
| 2:00 p.m.      |                             | Marciel               |
|                |                             |                       |
|                |                             | Joan Morrissey        |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
|                | Next Steps                  | Nelvis Castro         |
|                |                             |                       |
|                |                             | Owen Devine           |
+----------------+-----------------------------+-----------------------+
|                |                             |                       |
+----------------+-----------------------------+-----------------------+
| ***Session     |                             |                       |
| T***           |                             |                       |
+----------------+-----------------------------+-----------------------+
| 2:00 p.m. --   | Closings Comments and Thank | Alan Rabson, M.D.     |
| 2:15 p.m.      | You to Participants         |                       |
+----------------+-----------------------------+-----------------------+

### I.3 Workshop Summary {#i.3-workshop-summary .unnumbered}

**I-131 Fallout from NTS: Informing the Public**

**January 19-21, 2000**

**Workshop Summary**

On January 19-21, 2000, a workshop titled "I-131 Fallout from NTS:
Informing the Public" was held in Rockville, Maryland. It was sponsored
by the National Cancer Institute (NCI) and the Centers for Disease
Control and Prevention (CDC) and planned in consultation with a working
group of citizen representatives and state health department staff. This
report summarizes the workshop proceedings for the benefit of
participants and other interested individuals and organizations.

-   Section I.3.1 - Workshop Proceedings

-   Section I.3.2 - List of Working Group members and government staff

-   Section I.3.3 - Workshop Participants

-   Section I.3.4 - Proposed Campaign Operating Principles

-   Section I.3.5 - List of Other Resources

The working group designed the workshop with five outcomes in mind:

1.  Obtain input for the ongoing process of campaign development and
    implementation, including the structure for continued public
    participation in the process.

2.  Get input on target audiences and a process for developing messages.

3.  Get suggestions for additional audience research.

4.  List the scientific questions that still need to be addressed,
    including suggestions for an April workshop on screening to be
    hosted by the Advisory Committee for Energy-Related Epidemiologic
    Research (ACERER), which advises the Department of Health and Human
    Services (DHHS) on radiation research[^2].

5.  Identify ways to leverage this model process to benefit subsequent
    efforts on the full range of health effects from radionuclides
    released from the Nevada Test Site (NTS).

The workshop brought together affected citizens, consumer advocates,
physicians, scientists, health department representatives, risk
communicators, and government officials. Some had a long history with
radiation fallout issues; others were new to the field but experienced
in communications or reaching specific at-risk populations.

By the end of the three-day workshop, participants agreed on a set of
campaign goals, provided organized feedback on four areas of campaign
development, and developed a "wish list" of outcomes they would like to
see in the near and distant future.

#### I.3.1 Workshop Proceedings {#i.3.1-workshop-proceedings .unnumbered}

##### I.3.1.1 Day One {#i.3.1.1-day-one .unnumbered}

Opening and Introductions

The workshop was opened by Alan Rabson, M.D., Deputy Director of the
NCI, and Mike Sage, M.P.H., Acting Deputy Director of the National
Center for Environmental Health at the CDC. They charged the group with
providing input to NCI and CDC in the development of a communications
program that will 1) inform the public, and more particularly, the
members of the public who are at high risk for health problems because
of their exposure to radioactive iodine-131, and 2) educate health
providers so they can provide appropriate care. The challenge will be to
figure out how best to communicate the history, the science, and the
possible health risks from exposure to radioactive iodine-131 from the
Nevada Test Site. Dr. Rabson noted the active interest of the Department
of Health and Human Services (DHHS), acknowledging the presence of Dr.
William Raub, representing DHHS Secretary Donna Shalala.

Denise Cavanaugh, the workshop facilitator, reviewed the ground rules
and desired outcomes for the workshop. She reiterated the desire to
identify some common ground, to provide scientific background, history
on the issue, and to discuss the communications challenges and
strategies that might be employed in the campaign. Ms. Cavanaugh
encouraged participants to use the listserv set up by NCI to interact
and give additional feedback after the workshop. A handout was provided
with directions on how to subscribe to the listserv. Ms. Cavanaugh also
pointed out the Operating Principles drafted by the working group.

Overview and History

Mark Epstein of Porter Novelli, Washington, D.C., gave a brief overview
of the history of the Nevada Test Site, referring participants to the
Institute of Medicine (IOM) Report[^3] and working group member Trisha
Pritikin's document[^4] for further details.

Robert Lawrence, MD, of Johns Hopkins University, and chair of the IOM
Committee that reviewed NCI's report[^5] on I-131 dose estimates,
offered a brief presentation of the IOM Report. He focused on the
factors that contribute to individual dose estimates and the problems in
making estimates due to geographic variation, dietary patterns, and
individual susceptibility. He agreed that excess cases of thyroid
disease were caused by radioactive fallout, but he asked whether trying
to identify individuals who are at greatest risk and screening them
would lead to greater harm than good. And so, the IOM committee took the
approach "first, do no harm," in recommending against mass screening for
thyroid cancer. He encouraged the group to work toward a communications
program that focuses on shared decision-making between individuals and
their health care providers.

Trisha Pritikin, a member of the working group, brought the perspective
of a citizen exposed to NTS fallout and environmental ionizing radiation
emissions, including I-131, from the Hanford nuclear weapons facility.
She noted that radioiodine is only one of a host of biologically
significant radionuclides released during the NTS nuclear bomb tests.
She asked that this I-131-focused campaign be followed by similar
campaigns on other NTS radionuclides. She called for an appropriate
government response to these involuntary environmental exposures. She
also encouraged a discussion of government-sponsored screening for those
at highest risk from their childhood exposures, as is anticipated to
occur at an upcoming ACERER meeting.

Ms. Pritikin detailed the impact of radioactive fallout on her family,
describing her illness and the death of both of her parents. She grew up
in Richland, Washington, adjacent to the Hanford nuclear weapons
facility. She called for estimates of cumulative exposures and risk,
based on multiple radioactive exposures such as NTS, Hanford, and global
fallout. She also called for discussion of all potential health
outcomes, including thyroid cancer, autoimmune thyroiditis,
hypothyroidism, hyperthyroidism, hyperparathyroidism, and other related
diseases. She noted that screening for non-cancer outcomes involves a
simple blood test, which has a different benefit/risk ratio than thyroid
cancer screening.

At the completion of her presentation, Ms. Pritikin read from the
written and oral transcripts of the Hearing before the Senate Permanent
Subcommittee on Investigations of the Committee on Governmental affairs,
citing Senator Tom Harkin's support for medical screening for those at
highest risk from NTS I-131 exposures, and citing his disagreement with
the recommendations against screening made by the IOM committee that
reviewed the NCI I-131 report. Dr. Lawrence, chair of the IOM committee,
responded by stating that he had spoken with senior members of Senator
Harkin's staff regarding these IOM recommendations, and that those staff
members then indicated that they understood why the IOM made the
recommendations it did.

The Science of I-131 Exposure and Health

Charles Land, Ph.D., of NCI's Division of Cancer Epidemiology and
Genetics, explained how NCI developed its estimates of exposure and
explained why children were at higher risk than adults: children are
more sensitive to radiation; their thyroid glands receive higher doses
from ingested or inhaled I-131. They have a higher intake of milk (the
main pathway of ingestion), and higher metabolism.

Steve Simon, Ph.D., of the National Research Council's Radiation Effects
Research Board, described dose estimates. He explained how dose is
calculated and described how uncertainty is factored in. He also showed
a number of maps that showed the high exposure areas, or "hot spots," by
birth year.

Both speakers described the complexity of estimating exposure and doses
and the limitations of the sources of I-131 exposure information from
the 1950s and 1960s, based on the time of year, weather patterns, cow
grazing patterns, dairy management practices, etc. Dr. Simon explained
the difficulties in coming to individual dose estimates, which rely on
the accuracy of the person's memory of where they were and what they
were doing during the testing. County-specific estimates already carry a
high degree of uncertainty. Individual estimates are more uncertain,
still.

F. Owen Hoffman, Ph.D., from SENES Oak Ridge, Inc., shared his
perspective. He stated that, although the risk from exposure to
iodine-131 is uncertain, it does not prevent us from estimating risk.
The uncertainty can be quantified, allowing an estimated range of 8,000
to 208,000 excess cases of thyroid cancer due to NTS fallout. He
suggested that most of the excess cases would occur in females who were
children at the time of the testing and who resided in the eastern
United States because that was where the population was most dense and
where the most milk was produced.

Age, gender, and diet are more important determinants of risk than is
location, said Dr. Hoffman. He also noted the need to bring together
dose reconstructions from various sources of fallout to estimate
cumulative doses. He also called for work to extend discussion beyond
iodine-131 to other radionuclides in both NTS and global fallout.

Dr. Hoffman argued that health risk evaluations with regard to fallout
should include more health effects than thyroid cancer, such as benign
nodules and autoimmune thyroiditis. He also urged that other I-131
exposure sources and time periods beyond 1962 be investigated, including
the underground testing era.

Dr. Hoffman also reported that there is now a more sophisticated method
of calculating the uncertainty associated with dose estimates than what
was used in the NCI online dose calculator. Calculations using the
"Monte Carlo" method take into account the adding of uncertainties from
disparate time periods, and result in smaller uncertainty ranges.

Public Health Communications Challenge

Elaine Bratic Arkin, a health communications consultant, defined health
communications and social marketing, using a CDC definition: "the
crafting and delivery of messages and strategies based on consumer
research to promote the health of individuals and communities."
Communications can prompt people to take simple actions, like call a
toll-free number or make an appointment with a doctor. It can correct
misconceptions, and it can coalesce relationships. She said that the
campaign's challenges include the public's complacency (since these
exposures happened decades ago), a media environment cluttered with
health messages, and a very complex topic to convey to the public.

To be successful, the communications campaign needs to be planned,
budgeted and supported over time, Ms. Arkin stated. It needs to be
tracked and evaluated in case adjustments are needed. It may need to be
part of a multifaceted program, coupled with provision of services and
physician education, for example. She also described the components of a
communications plan.

Table Discussions

Small group discussions following Ms. Arkin's presentation focused on
two questions: what is the issue, and what one change might advance the
effort? Some of the issues and actions discussed:

-   Lack of trust in the government

-   The government must accept accountability for past events and future
    actions.

-   The program should be comprehensive instead of separating nuclear
    fallout from mining, milling, production, waste, and weapons use. In
    other words, the public wants to know about isotopes beyond I-131
    and exposures beyond Nevada Test Site.

-   There are two public health issues here: the actual physical impact
    of exposure and the psychological stress induced in people by the
    exposure.

-   How will we help people who are mobile and speak a language other
    than English understand the risk?

-   We've got to make clear there was an impact, even if we are
    uncertain about the magnitude.

-   There is a need to educate physicians so they will take patients'
    complaints and concerns seriously. If a doctor is honest and
    up-front, the patient will have less fear and uncertainty.

-   Physicians must be contacted before a public campaign is launched.
    We need to get the attention of primary care physicians and get
    health care providers, such as HMOs, on board.

-   It may be difficult to identify a credible source for the
    information, due to issues of mistrust.

-   There are two components: a notification piece, to educate and
    reduce fear, and a call to action so that high-risk individuals will
    seek medical advice, which would include educating physicians to be
    prepared to respond. There also may need to be some kind of direct
    help for the affected citizens from the government.

-   Give people a full view of their risk from a combination of sources.

-   Give people the information they need about risk factors so they can
    determine their own risk level and then give them information on
    obtaining follow-up consultation or care, if needed.

Panel 1: Interest Group Perspectives

Working group member Seth Tuler, Ph.D., of the Childhood Cancer Research
Institute and Clark University, moderated the workshop's first panel
discussion. Dennis Nelson, Ph.D., of Support and Education for Radiation
Victims (SERV), described the lifestyle of the downwinder population
near the Nevada Test Site to give a sense of the downwinder's exposure.
He argued against focusing exclusively on I-131 and cancer and called
for a national plan to notify people throughout the country so that they
could look into their own exposures and seek early detection.

Maureen Eldredge of the Alliance for Nuclear Accountability described
her organization's relationship with the government on nuclear weapons
issues as a pattern of deceptions and cover-ups. She stated that the
government has an obligation to tell the public that they were
involuntarily and unknowingly exposed, regardless of how low the
exposure or how minimal the health risk. She suggested also looking at
all thyroid disease, not just cancer, and helping people figure out
their cumulative doses so they have the full picture of their exposures.
It is not up to the government to decide what information people should
or shouldn't have because they might make a bad decision with all the
information. People should make their own decisions about their health
care. Lastly, she said that we should be aware of the impact of money.
She said the government might be fearful of providing information out,
as people who were exposed may sue the government, whether or not they
suffered any ill consequences of exposure. She said the government
should pay for the communications, the training and education of health
providers, and perhaps even for treatment.

Tim Takaro, MD, of the University of Washington, represented Physicians
for Social Responsibility. In his experience with Hanford, the people in
the Northwest want to know about their families' illnesses. They want to
know if they are at risk, whether they should be tested, and whether
their children may be affected. He noted the importance of cumulative
doses and called for looking at exposure from mining through weapons
disposal. At the same time, physicians don't need to get an accurate
dose on a patient to address concerns about risk for certain diseases
based on their exposure from Hanford, NTS, and others. He noted that
screening large populations with no restrictions is not cost effective,
but that screening should not be denied a person who is concerned about
his health and the impact of radiation exposure. Physicians will need to
address patient anxiety, which in itself is a psychological and
physiologic burden.

Robert Holden, of the National Congress of American Indians, discussed
the history of the relationship between the federal government and
native peoples, stating that the government has a responsibility, based
on treaties, to provide for Indian health and welfare. Many Native
Americans had multiple exposures. For example, uranium was mined on
Navajo land and a national laboratory sits on Pueblo land. He noted that
there are certain protocols to communicate with tribal officials. He
stated that he hopes that the Native American community can continue a
relationship with those planning this campaign to help them better
understand Native Americans. He suggested a Native American caucus to
work on these issues.

F. Lincoln Grahlfs, Ph.D., is an atomic veteran representing the
National Association of Radiation Survivors. He described his experience
educating Congress that nuclear radiation is hazardous and getting the
word out about the NCI report. His group's media work got tremendous
response in areas like St. Louis, Missouri, and Idaho Falls, two "hot
spot" areas identified in the report. He warned that special interest
groups might try to sabotage efforts to educate the public on issues of
radiation exposure and health risks.

Mike Hansen, Ph.D. represented Jean Halloran from Consumer's Union. From
his background working on advocacy issues on pesticides and genetically
engineered foods, he stated that the government will have to do a few
things to gain credibility: 1) take a comprehensive view, broader than
I-131 and all potential health effects, 2) provide as much information
as possible, and 3) admit the government was wrong. Even if the risk is
small, the public will get upset at risks that were involuntary, that
they had no control over, and that were done to them without their
knowledge. The government will need to be upfront about what happened
and how much they don't know. They'll need to work with grassroots
organizations and those advocacy organizations that are critical of the
government in order to make the campaign successful. The process will be
difficult, but important. He suggested working with *Consumer Reports*
magazine to write an article on this topic. Dissemination would be
widespread, with a readership of 4.8 million subscribers in their 50s
and 60s.

Seth Tuler ended the panel by discussing the findings of the ACERER's
subcommittee for community affairs. 1) Federal efforts to address the
public health consequences of NTS fallout are still inadequate. 2)
Difficulty identifying specific fallout injuries does not absolve the
federal government of its responsibility to shape a meaningful public
health response. 3) Research is not a public health response and is not
a substitute for the assistance that many exposed people believe that
the government has a responsibility to provide. 4) Delays in sharing
important public health information about fallout exposures have
reinforced public cynicism toward federal officials.

He then reviewed the ACERER's recommendations: 1) Fulfill the
legislative intent of Public Law 97-414, which mandated NCI's study of
I-131 NTS fallout; 2) Complete a comprehensive dose reconstruction
project for NTS fallout, with an oversight committee created to keep
things on track; 3) Notify Americans of the factors that might help them
determine if they received significant radiation doses from NTS fallout,
targeting high-risk groups; 4) Create a public and health care provider
information service; 5) Support an archival project to document the
experiences of exposed people; 6) Further evaluate screening
opportunities for thyroid disease.

He finished by summarizing the common themes heard during the panel
discussion.

-   The legacy of mistrust

-   Identifying who is at high risk and providing more to them than mere
    notification

-   Empowering people to make informed decisions about their health care

-   Addressing fears versus creating fears

-   Covering multiple exposures and contaminants

-   Overcoming political resistance to implementing programs

Panel 2: Health Provider Channels and Gatekeepers

The final panel on the first day of the workshop included health
professionals and gatekeepers. Kevin Teale, of the Iowa State Health
Department, moderated. He began by pointing out the challenge the group
faces in trying to get a message about this complex topic out to the
broadcast media, which relies on four-second sound bites. He also raised
the issue of getting the public to pay attention to the risk, when they
already don't pay attention to some of the big health risks like smoking
or weight control.

R. Michael Tuttle, M.D., from Memorial Sloan-Kettering Cancer Center, is
a practicing thyroid specialist. He treats patients with thyroid
disease, many of whom already ask him about radiation exposure and their
disease. He sees a big challenge in translating excess relative risk,
radiation dosage, and other relevant technical jargon into something
meaningful to tell a patient. The program will have to help physicians
define who is high-risk and help them discuss risk in a way that makes
sense to their patients, which may vary by geographic location and
cultural background. It must give physicians a strong scientific
rationale for determining whether a patient is at risk or not.

Henry Royal, M.D., of the Washington University School of Medicine, was
a member of the committee that wrote the IOM Report. He contrasted the
public health perspective, which shows that thyroid cancer accounts for
just 3% of all cancer deaths, with the personal, devastating perspective
of a family member dying of thyroid cancer. He advocated allocating
limited health care resources where they can have the greatest impact to
reduce premature deaths. He acknowledged the difficulty in taking this
view when individuals are dying of thyroid cancer, but shifting public
health resources to a program that would have a small public health
impact would cause others to needlessly suffer the tragedy of premature
death.

Delvin Littell, M.D., of the Morgan County Medical Center, adjacent to
Oak Ridge, Tennessee, encouraged the group to work with the
organizations of community health centers, clinics that reach low-income
individuals. In particular, he noted that the migrant labor movement
might offer a resource of particular use with people who don't trust
"the system." He also advised that communicators keep in mind how they
would like to be treated when developing messages and strategies to
reach the public.

James Flynn, Ph.D. Decision Research, talked about risk communications,
explaining that the messages developed for this campaign will be going
to people who will receive them within the context of suspicion of
nuclear technology as well as their personal experiences and preformed
judgments. These factors will affect the way they receive and respond to
the messages.

Kristin Shrader-Frechette, Ph.D., of the University of Notre Dame,
provided a medical ethicist's perspective. Two things she says have gone
wrong with risk communication about radiological hazards are: the
tendency to present scientific opinion as if it were fact and the
tendency to make covert ethical judgments as if they were scientific
judgments. She used the example of the IOM report recommending against
mass screening because of the benefit to harm ratio. That's a value
judgment that takes away individual rights. In a democracy, people have
the right to know, the right to compensation, to due process, and to
self-determination. People have the right to make mistakes for
themselves. Lastly, she stated that, to communicate in a credible way,
the government will have to state that this will not be repeated. People
are willing to forget the past if we can assure them that what they went
through in the past is not going to happen again. Deciding about
screening is not just a scientific issue, it is an ethical issue and
several members of the public should be involved in the decision-making.
She recommended using the 1996 National Research Council report,
*Understanding Risk: Informing Decisions in a Democratic Society*, as a
way to improve risk communication and involve the public in a meaningful
way. She also argued that the government is obligated to take
responsibility and spend health care dollars on this issue, even if it
involves diseases with small public impact because the government is
accountable for the radiation fallout and its impact.

##### I.3.1.2 Day Two {#i.3.1.2-day-two .unnumbered}

Screening/Medical Monitoring

Day Two began with a session on Screening and Medical Monitoring. Robert
Spengler, Sc.D., of the Agency for Toxic Substances and Disease
Registry, and R. Michael Tuttle, M.D., reviewed existing recommendations
and programs for screening and monitoring. They provided a handout that
described the recommendations of various interested organizations and
studies. Dr. Spengler also presented the proposed Hanford Medical
Monitoring Program, which is not yet funded. He discussed recent
revisions to the proposed program that address and reduce the potential
harms of thyroid cancer screening expressed in the IOM report. In
addition, he submitted documents on the proposal and revisions to NCI as
handouts for the participants.

Keith Baverstock, Ph.D., of the World Health Organization, Helsinki,
Finland, and Owen Hoffman, Ph.D., talked about assessing individual
risk. Dr. Baverstock discussed the value of estimating individual risk,
and the limitations of such estimates. He presented the NAS/IOM scheme
for describing individuals' risk as falling into three non-numerical
categories. Individuals born after the cessation of testing are not at
risk; individuals over 18 at the time of testing are at very low risk.
For other age categories, the NAS/IOM recommends that DHHS develop a
method for calculating an individual "score"---for purposes of
categorizing only, not as a numerical expression of risk---that takes
into account location, milk consumption, milk source, and gender
differences. The resulting scores would then be linked to
recommendations for appropriate actions for individuals in each
category.

Dr. Hoffman discussed the identification of high-risk sub-groups. He
suggested the following criteria be used to determine high-risk status:
those in childhood at the time of atmospheric testing, goat's milk
drinkers, those with a family history of thyroid cancer or other thyroid
abnormalities, and those with estimated doses above a given decision
level. Dr. Hoffman emphasized that for the case of goat's milk drinkers
who were children during the testing period, enough is known already to
classify them as high-risk, without further dose refinement. He
highlighted the inherent uncertainty of individual dose estimates and
proposed that decisions be based on either the upper or lower bound of
confidence on the dose estimates, and suggested a detailed framework for
doing this.

Valerie Fiset, R.N., M.Sc.N., of the Sisters of Charity Ottawa Health
Service, Ontario, Canada, presented a model for helping people make
difficult health-related decisions. Decision aids walk patients, with
their health care provider, through steps that help them look at options
available, the potential outcomes of those options, then help the
patient consider their values in relation to those options. Decision
aids are used when the outcomes of the options are not very well known
and the patient needs to judge the value of the benefits and risks. They
are also useful when there is practice variation around a screening or
treatment option. Her group has developed decision aids around
chemotherapy for advanced lung cancer, hormone replacement therapy, and
lumpectomy versus mastectomy for breast cancer treatment.

At this point, participant discussion began. Audience members were
looking for clarification of the scope and goals of the campaign. Some
expressed frustration with the government's past record on radiation
issues and skepticism that things would change. Denise Cavanaugh, the
workshop facilitator, asked the group to make recommendations and to
develop a "wish list" of outcomes for the campaign. They are listed
below.

General Recommendations

-   Move forward with a campaign. Do not wait until all of the science
    is in. Talk about what you know and explain that more information on
    dose and associated risks will be provided when feasible.

-   Educate the "publics" about the basics of radiation fallout,
    exposure (from individual facilities, and globally), and health
    impacts, while giving a sense of the complexity of the information.

-   Keep public representatives involved as partners.

-   The participants agreed on a framework to discuss I-131 first and
    then additional radionuclides, as information becomes available.
    That framework was called: "Public Health Legacy of Nuclear
    Production, Research, and Testing."

"Wish List" of Activities

**Near Future (3 months)**

-   A communications plan with financial support.

-   A decision about access to federally sponsored screening for
    uninsured and underinsured populations.

-   Inclusion of state health departments in campaign development and
    implementation.

-   Partnership with Native American tribal governments in developing
    the campaign.

-   Use of the listserv as an interactive communications tool for
    discussion and review of draft planning documents.

-   Consideration of a resource center with a toll-free number, i.e., an
    entity responsible for delivery of information.

-   Development of an archive (or expansion of existing archives around
    the country) of documents and resources pertaining to the NTS and
    resulting exposures, in keeping with the ACERER recommendation.

-   Continuation of relationships built at the January 2000 Workshop.

-   Government acknowledgment of the legacy of nuclear production,
    research, and testing and commitment to prevention in the future.

-   A clear set of recommended actions for the public to take with
    regard to exposure.

-   Study of the ongoing health effects of existing nuclear action.

**Distant Future (36 months**)

-   Outreach to communities.

-   Outreach to federal agencies.

-   Physician education implementation.

-   Evaluation of campaign implementation.

-   Benchmarks for physician education, etc.

-   Development of cultural- and language-appropriate messages/materials
    for special populations.

-   Addressing additional radionuclides.

-   American public understanding fallout and health legacy.

Developing Model Outreach

Peter Sandman, Ph.D., a risk communications consultant, explained the
difference between hazard (how dangerous something is) and outrage (how
much it upsets people) and the fact that they are often poorly
correlated. He suggested a two-pronged campaign. One audience is people
who are significantly endangered by NTS fallout and deserve a warning.
The second audience is the larger public whose hazard is low. He offered
five options for messages to them, ranging from doing what you can to
keep them from becoming outraged to getting them outraged to organize
them politically. He suggested that the diverse interests in the room
could work together on a campaign to reach those who are high risk, but
would probably need to work separately to communicate to the larger
public, since their goals would likely vary.

Regardless of how hazardous the fallout is to the public's health, Dr.
Sandman noted that public outrage over nuclear fallout should be
expected and is justified based on a list of twelve factors, including
the involuntary nature of the exposure and the government's
unresponsiveness to public concern. He said that in order to be
credible, the government must acknowledge the outrage and admit that it
is justified. He ended by saying that the government should apologize a
lot; overestimate, rather than underestimate the risk; show concern,
feeling and humanity; and acknowledge the moral relevance of the
situation.

Neil Weinstein, Ph.D., of Rutgers University, discussed the challenges
involved in communicating about risk, based on his experience with radon
and other programs. He talked about the public's difficulty in
understanding numbers and probabilities and the likelihood that people
will be apathetic to the message that a health risk has occurred. He
also warned against providing too much information in an effort to
enable people to make their own informed decisions. He advocated giving
recommendations for action with sufficient background information,
without flooding people with all the details on dosing, probabilities,
and the science of I-131 exposure.

Ed Maibach, Ph.D., of Porter Novelli, presented the results of six focus
groups held with consumers and physicians to begin getting a sense of
their knowledge and attitudes about radiation fallout and health risks,
to understand their perceived risk, their degree of concern, and to
understand their needs for information on these issues. The participants
were drawn from two cities with a high exposure to I-131 and one with a
lower exposure. The preliminary report was provided at the meeting.

-   The consumers in both areas showed little concern about radiation
    fallout, had little interest in something that occurred in the past,
    and were more concerned by health issues they face today. But there
    was great passion for securing assurances that the tests never
    happen again. People wanted to know the big picture about the
    consequences of NTS testing rather than just about I-131.

-   The physicians knew very little about nuclear testing and its health
    impacts. They called for a permanent ban on nuclear testing. They
    asked that a public education campaign not be mounted because it
    would create a mess without helping the public. They said a
    physician campaign might be a good idea, though they weren't
    convinced it would change their clinical practice at all.

Dr. Maibach ended by reminding the workshop participants that this was
just the beginning of the audience research needed to develop a
campaign. During the question and answer period following the
presentation, workshop participants noted the likelihood that focus
group responses were tied to the source and format of the information
stimulus they received. It was pointed out that this should be taken
into account in locating appropriate "messengers" for delivering
exposure information to the public. Later in the workshop, the
participants spent time discussing additional audience research needs.

Campaign Goals

Following the audience research presentation, workshop participants
developed four goals for the communication campaign, which received wide
support:

1.  Acknowledge/explain what happened as a result of nuclear weapons
    production, research, and testing and what is happening now. Engage
    or encourage the public in a policy discussion on this issue.

2.  Educate the public on the potential health consequences of I-131 and
    other radiation exposures so they can make good decisions. Provide
    mechanisms for follow-up (e.g. toll-free number) for people without
    a health care provider.

3.  Educate health care providers about the health consequences of I-131
    fallout and other radiation exposures as well as the pros and cons
    of thyroid evaluation so they can help their patients make good
    decisions.

4.  Facilitate diagnosis, screening, and if necessary, treatment, for
    those with cancer and non-cancer radiation-related illnesses.

A number of organization representatives committed to working on
specific campaign goals:

-   Physicians for Social Responsibility, Alliance for Nuclear
    Accountability, and the National Indian Council on Aging expressed
    interest in working on goal #1 and bringing the topic to their
    organizations' meetings in May (PSR and ANA), and August (National
    Indian Council on Aging).

-   Physicians for Social Responsibility, Alliance for Nuclear
    Accountability, National Association for the Advancement of Colored
    People (NAACP), and the National Association of Radiation Survivors
    offered to work with the federal government on goal #2.

##### I.3.1.3 Day Three {#i.3.1.3-day-three .unnumbered}

Organized Feedback

In small working groups, participants gave feedback regarding:

-   Design of an ongoing campaign development workgroup.[^6]

-   Recommendations for issues to be addressed at the April 2000 ACERER
    workshop on screening.

-   Additional audience research needs.

-   Preparation for audience messaging: What key information needs to be
    communicated?

Each small group's recommendations and comments are presented below.

##### 1. Campaign Development Workgroup {#campaign-development-workgroup .unnumbered}

The workgroup that worked with NCI and CDC to plan the January workshop
included individuals familiar with the following perspectives, groups,
or organizations:

-   Hanford downwinders

-   Alliance for Nuclear Accountability

-   ACERER Subcommittee for Community Affairs

-   Hanford Health Information Network

-   NAACP

-   Physicians for Social Responsibility

-   A Physician

-   State Public Health Department (Radiological Health Section)

-   NCI/CDC/ATSDR staff

Workshop participants in the small group that discussed this topic
proposed that the new "Campaign Development Group" include the following
types of representation (this is a list of perspectives to be
represented---not specific organizations):

-   Activists (2)

-   Downwinders (2)

-   African American

-   Health educator

-   Health professional organization

-   Hispanic from community and migrant health center

-   Native American

-   Physician

-   State Public Health Department: health education and radiation
    control (2)

-   Local health department

-   Thyroid Foundation

Criteria for inclusion in workgroup:

-   Long-term view

-   A view broader than I-131 and thyroid cancer

-   Ability and willingness to make necessary time commitment

-   Ability to do outreach to their communities

-   Work toward geographic diversity

It was also agreed that workgroup members need to be reimbursed
equitably for the work they do on this project, and that the federal
agencies involved must commit adequate staffing to this effort.

**2**. **Recommendations for topics to be addressed at the ACERER
meeting to address screening issues**

-   Feasibility of identifying higher- and lower-risk groups

-   Basis for decisions regarding policies on screening---scientific
    analyses alone, versus incorporation of social justice
    considerations

-   Risks and benefits of screening for cancer and non-cancer thyroid
    illness

-   Incidence of false positives from most recent Hanford Thyroid
    Disease Study thyroid cancer medical evaluation

-   Review of science regarding noncancer thyroid outcomes of I-131
    exposure

-   Cumulative effects: how do multiple exposures change a person's risk
    classification?

-   Progress report on research into other radionuclides

-   Examination of other screening programs around the world

-   Potential funding mechanisms for screening programs; comparison of
    other screening programs

-   Case study of affected citizens

-   Operating principles

A workgroup will help plan the ACERER workshop. Individuals working on
this list offered to participate. They were: John Bagby, Trisha
Pritikin, Henry Royal, Robert Spengler, Oscar Tarrago, J.B. Hill, David
Becker, and Steve Simon. Tim Takaro, Keith Baverstock, Owen Hoffman, and
Kristin Shrader-Frechette also expressed interest in participating in
the planning process.

**3. Recommendations for Additional Audience Research**

Who are we trying to reach? This must be determined before audience
research begins. Once this is determined, the research would address:

-   Demographic research on language, culture, education, and literacy
    levels.

-   Preferred sources of information.

-   Psychographic data \-- beliefs/attitudes, epidemiologic data, role
    of the media.

-   Message and strategy testing \-- look at research and campaigns that
    have already been done. Do a meta-analysis to transform and digest
    that data to determine audience needs.

-   Process evaluation: Was the campaign done on time, within budget?

-   Outcome evaluation: What were the campaign's effects? What was the
    reach, frequency, and duration of communications? How many were
    exposed over a period of time? What were the effects on knowledge,
    attitudes, and behaviors? What were the long-term effects on
    behaviors?

**4. Preparation for Audience Messaging: What key information needs to
be communicated?**

-   The general United States population should receive information to
    improve their awareness.

    -   Give historical context, discuss research, production, and
        testing. Discuss I-131 and other radionuclides. Discuss local
        testing, global fallout, associated social and ethical issues,
        and general risk factors (e.g., milk, and gender) so that people
        can self-identify. Give history of government action and where
        there is still work to be done. Describe the work that continues
        on outstanding issues to ensure that exposures from testing
        won't happen again.

-   "Hot spot" audiences should receive:

    -   All the information that the general United States population is
        receiving (see above).

    -   Information on general risk factors plus multiple exposures so
        they can self-identify.

    -   Assurance that health care providers and other agencies (e.g.,
        managers at DOE/contractor facilities) are being told about
        this.

-   Self-identified as at-risk or other concerned people should receive:

    -   Information that the above audiences receive.

    -   Information on what to do if you don't have a health care
        provider.

    -   Details on the ongoing work regarding outstanding issues
        (screening, compensation, etc.)

    -   A fact sheet from an official organization to bring to a clinic
        or physician's office.

-   Health care providers should receive:

    -   Everything the above two audiences receive and additionally,
        resources on screening for all thyroid disease.

-   Payers of Healthcare (HMOs, government programs) and insurance
    commissioners should receive:

    -   Clinical practice guidelines or Standards of Care.

-   Workers (research, production, mining, etc.) should receive:

    -   All information that "hot spot" and self-identified at-risk
        people receive.

-   State Health Departments should receive:

    -   All information that health care providers receive so they know
        they will also be disseminators, and must be kept informed as
        campaign progresses.

-   State Regulators should receive:

    -   All the same information that health care providers and state
        health departments receive.

        We still need to determine the right organizations to
        communicate messages to various target audiences.

Summary Comments

Anne Lubenow, Acting Co-chief of the Health Promotion Branch in the
Office of Cancer Communications, NCI, thanked all of the participants
and expressed NCI's appreciation for everyone sharing their views. She
encouraged participants to contact the NCI staff as needed. She also
stressed that although we don't yet have all of the answers, we are on
the road to developing a campaign, and have identified some common
ground, as well as areas that need further discussion.

Joan Morrissey, Health Communicator with the Radiation Studies Branch,
CDC, followed by thanking the workgroup for the tremendous amount of
work they put in to planning this successful workshop. She specifically
noted her desire to put together a Native American caucus, as suggested
by Robert Holden. She reiterated the agencies' commitment to developing
and implementing this program and doing it right.

A sampling of participants' closing remarks

"It's been really heartening for me as a person from a significantly
impacted community to feel that all these people actually care about
people like me, finally, because there are a whole lot of times when I
don't feel that way. And I want to thank the agencies involved for never
telling us that we couldn't discuss something. We were able to put all
the issues on the table and discuss everything that I think people
wanted to talk about. I feel very good about this process."

"I see an incredible variety of talent, knowledge, and goodwill in this
room, and I see a huge opportunity to make a truly positive impact on
all of society."

"A grave concern in all of this is that these issues have the ability to
divide people in this country rather than unite them. If the same spirit
of bringing different people together here could be the spirit of
whatever moves out of it, I think we can go very far."

Next Steps

Nelvis Castro, Acting Associate Director for Cancer Communications at
the NCI, thanked the participants for their candor and their dedication
to this effort. She stated that the summary of the meeting would be
posted on the listserv for a 2-week comment period, then finalized and
distributed to interested parties. Dr. William Raub has committed to
bringing the report to Secretary Shalala's attention. A Campaign
Development Group will be formed and will review the draft
communications plan and help with future activities. She estimated that
the plan will take about six months to draft. The plan will be refined
and modified as necessary based on feedback received from this group.
She also hopes to learn about the communications channels that
participants use to reach their constituents to expand the reach of the
messages that are developed for this campaign.

Owen Devine, Ph.D., chief of the Risk Assessment and Communication
Section, Radiation Studies Branch, CDC, talked about future plans to
study other radionuclides and global fallout. A feasibility assessment
will be presented to ACERER in June 2000 and to Congress in July 2000.
It will be an assessment of the scientific feasibility of estimating
dose and risk to the United States population from global fallout,
including NTS. There will be a large discussion of communications in the
report as well. He thanked all of the participants.

Dr. Alan Rabson closed the meeting by repeating the apology for NCI's
delay in finishing the Nevada Test Site Fallout report. Processes have
been put in place at the Institute so that such an "unconscionable
delay" will never happen again. He called the workshop an "historic
meeting" that has given NCI a new understanding and commitment to
working with community representatives. He assured participants that NCI
intends to follow through.

#### I.3.2 List of Working Group Members and Government Staff {#i.3.2-list-of-working-group-members-and-government-staff .unnumbered}

##### I.3.2.1 Community Representatives {#i.3.2.1-community-representatives .unnumbered}

H. Jack Geiger, M.D. - (Departed group 11/99)

James B. Hill, Jr. - President, NAACP, Oak Ridge Branch

Yvette Joseph-Fox - National Indian Health Board (Departed group 10/99)

Bea Kelleigh - Executive Director, Hanford Health Information Network
Resource Center

Stan Marshall - Radiological Health Section, Nevada State Health
Division

Robert Musil - Executive Director, Physicians for Social Responsibility

Trisha Pritikin, Esq., M.Ed., O.T.R. - Downwinder

Robert Tiller - Physicians for Social Responsibility (Departed
group12/99)

Seth Tuler, Ph.D. - Childhood Cancer Research Institute and Clark
University

##### I.3.2.2 Government Staff {#i.3.2.2-government-staff .unnumbered}

National Cancer Institute

Nelvis Castro - Acting Associate Director for Cancer Communications

Betsy Duane - Communications Coordinator, Division of Cancer
Epidemiology and Genetics

Mark Epstein - Porter Novelli (Consultant)

Anne Lubenow - Acting Chief, Health Promotion Branch

Kelli Marciel - Presidential Management Intern, Health Promotion Branch

Jim Mathews - Senior Science Writer, Health Promotion Branch

Alan Rabson, M.D. - Deputy Director, National Cancer Institute

Paul Van Nevel - Van Nevel Communications, (Consultant - then Associate
Director for Cancer Communications - retired as of 12/31/99)

Cori Vanchieri - Vanchieri Communications (Consultant)

Centers for Disease Control, National Center for Environmental Health

Owen Devine, Ph.D. - Chief, Risk Assessment and Communication Section,
Radiation Studies Branch (moved to another division 2/1/00)

Christie Eheman - Epidemiologist

Joan Morrissey - Health Communicator, Radiation Studies Branch

Judith Qualters, Ph.D. - Acting Chief, Risk Analysis and Communication
Section, Radiation Studies Branch

Agency for Toxic Substances and Disease Registry

Oscar Tarrago, M.D., M.P.H. - Fellow, Office of the Director, Division
of Health Education and Promotion

###  {#section-1 .unnumbered}

#### I.3.3 Workshop Participants {#i.3.3-workshop-participants .unnumbered}

(In alphabetical order by last name)

Elaine Bratic Arkin, Health Communication Consultant

John Bagby, Ph.D., Chairman, Advisory Committee for Energy Related
Epidemiologic Research

Wayne Ball, Ph.D., Toxicologist, Utah Department of Health, Bureau of
Epidemiology

Keith Frederick Baverstock, Ph.D., Regional Advisor, Public Health and
Environmental Radiation, World Health Organization

David V. Becker, M.A., M.D., Professor of Radiology, Professor of
Medicine, New York Presbyterian Hospital, Weill Medical College of
Cornell University

Marco Beltran, M.P.H., Program Specialist, Migrant Head Start Quality
Improvement Center

Joni Berardino, M.S., National Center for Farmworker Health

Luis Buen Abad, M.Ed., Environmental Specialist, Hanford Health
Information Network

John Burklow, Deputy Director for Communications, Office of
Communications and Public Liaison, NIH

Leticia Camacho, J.D., M.A., Director of Policy and Advocacy, Migrant
Clinicians Network

Nelvis Castro, Acting Associate Director, Office of Cancer
Communications, National Cancer Institute

David Cooper, M.D., Director, Division of Endocrinology, Sinai Hospital
of Baltimore

Sharon Cowdrey, R.N., President, Miamisburg Environmental Safety and
Health

Owen Devine, Ph.D., Chief, Risk Assessment and Communication Section,
Radiation Studies Branch, CDC

Betsy Duane, Communications Coordinator, Division of Cancer Epidemiology
and Genetics, National Cancer Institute

Christie Eheman, Ph.D., Epidemiologist, Centers for Disease Control and
Prevention

Maureen Eldredge, Program Director, Alliance for Nuclear Accountability

Mark Epstein, Communications Consultant, Porter Novelli

Valerie Fiset, R.N., M.Sc.N., Clinical Nurse Specialist, Palliative
Care, Sisters of Charity of Ottawa Health Service

James Flynn, Ph.D., Senior Research Associate, Decision Research

Patricia George, Community Research Coordinator, Nuclear Risk Management
for Native Communities Project

Thomas M. Gerusky, Certified Public Health Physicist, Retired Director,
Pennsylvania Bureau of Radiation Protection, Conference of Radiation
Control Program Directors

Hossein Gharib, M.D., Professor of Medicine, Mayo Medical School, Mayo
Clinic

F. Lincoln Grahlfs, Ph.D., M.A., President, National Association of
Radiation Survivors

Michael Hansen, representing Jean Halloran, Director, Consumer Policy
Institute, Consumers Union

James B. Hill, Jr., President, NAACP Oak Ridge Branch

Felicia Hodge, Dr.P.H., Director, Center for American Indian Research
and Education

F. Owen Hoffman, Ph.D., President, SENES Oak Ridge, Inc.

Robert Holden, Director, Nuclear Waste Program, National Congress of
American Indians

Bea Kelleigh, M.P.A., Executive Director, Hanford Health Information
Network Resource Center

Gary Kodaseet, Vice Chairman, National Indian Council on Aging

Susan Koppi, Director, Public Affairs, The Endocrine Society

Gary L. Kreps, Ph.D., Chief, Health Communication and Informatics
Research Branch, National Cancer Institute

Charles Land, Ph.D., Division of Cancer Epidemiology and Genetics,
National Cancer Institute

Robert Lawrence, M.D., Associate Dean for Professional Education and
Programs, School of Hygiene and Public Health, Johns Hopkins University

Lisa Ledwidge, M.P.A., M.S.E.S., Outreach Coordinator and Editor, SDA,
Institute for Energy and Environmental Research

Delvin Littell, M.D., Medical Director, Morgan County Medical Center

Paul A. Locke, M.P.H., Dr.P.H., Deputy Director, Pew Environmental
Health Commission

Anne Lubenow, M.P.H., Acting Chief, Health Promotion Branch, National
Cancer Institute

Roger Macklin, M.S., Health Physicist, Tennessee Department of
Environment and Conservation, Director of Radiological Health

Kelli Marciel, M.P.A., Presidential Management Intern, Health Promotion
Branch, National Cancer Institute

Stan Marshall, Radiological Health Section, Nevada State Health Division

James Mathews, Senior Science Writer, Office of Cancer Communications,
National Cancer Institute

Normie C. Morin, Ph.D., M.P.H., Project Director, Rocky Flats Health
Studies, Disease Control and Environmental Epidemiology Division

Joan Morrissey, Health Communicator, Radiation Studies Branch, Centers
for Disease Control and Prevention

Robert Musil, Executive Director, Physicians for Social Responsibility

Dennis Nelson, Ph.D., Director of Research, Support and Education for
Radiation Victims

Nancy Nelson, Mass Media Branch, Office of Cancer Communications,
National Cancer Institute

Claudia Parvanta, Ph.D., Director, Division of Health Communication,
Office of Cancer Communications, Centers for Disease Control and
Prevention

Judy Patt, Cancer Information Service, National Cancer Institute

Devon Payne-Sturges, M.P.H., Assistant Commissioner for Environmental
Health, Baltimore City Health Department

Stacye Poer, Program Analyst, Office of Legislation and Congressional
Activities, National Cancer Institute

Trisha T. Pritikin, Esq., M.Ed., O.T.R., Downwinder/Community
Representative

Idaho J. Purce, Project Director, HIV/AIDS Education, NAACP; INEEL
Health Effects

Judith R. Qualters, Ph.D., Acting Chief, Risk Analysis and Communication
Section, NCEH, Centers for Disease Control and Prevention

Alan S. Rabson, M.D., Deputy Director, National Cancer Institute

William Raub, Deputy Assistant Secretary for Science Policy, Department
of Health and Human Services

Karim Rimawi, Ph.D., Director, Bureau of Environmental Radiation
Protection, New York State Department of Health

Jacob Robbins, M.D., Scientist Emeritus, National Institute of Diabetes
and Digestive and Kidney Diseases

Henry D. Royal, M.D., Professor of Radiology, Division of Nuclear
Medicine, Mallinckrodt Institute of Radiology, Washington University
School of Medicine

Michael Sage, Acting Deputy Director, National Center for Environmental
Health, Centers for Disease Control and Prevention

Peter Sandman, Ph.D., Risk Communication Consultant

Elke Shaw-Tulloch, Manager, Environmental Health Education Program,
Idaho Division of Health

Kristin Shrader-Frechette, Ph.D., Medical Ethicist, Department of
Philosophy and Department of Biological Sciences

Steven L. Simon, Ph.D., Senior Staff Officer, National Academy of
Sciences, Board on Radiation Effects Research

Robert F. Spengler, Sc.D., Associate Administrator for Science, Agency
for Toxic Substances and Disease Registry

Patrice Sutton, M.P.H., Western States Legal Foundation

Diana Swindel, Associate Director, Communications Office, National
Center for Environmental Health

Tim K. Takaro, M.D., M.P.H., M.S., Acting Assistant Professor,
University of Washington School of Medicine

Oscar Tarragó, M.D., M.P.H., Fellow, Office of the Director, Agency for
Toxic Substances and Disease Registry, Division of Health Education and
Promotion

Kevin Teale, M.A., Communications Director, Iowa Department of Public
Health

Stephen Thomas, Ph.D., Associate Professor, Director, Institute of
Minority Health Research, Rollins School of Public Health, Emory
University

Tim L. Tinker, Dr.P.H., M.P.H., Chief, Communications and Research,
Agency for Toxic Substances and Disease Registry

Seth Tuler, Ph.D., Childhood Cancer Research Institute and Clark
University

R. Michael Tuttle, M.D., Assistant Attending, Memorial Sloan-Kettering
Cancer Center

J. Paul Van Nevel, Van Nevel Communications, Consultant to the National
Cancer Institute

Cori Vanchieri, Vanchieri Communications, Consultant to the National
Cancer Institute

Neil Weinstein, Ph.D., Professor, Department of Human Ecology, Rutgers
University

#### I.3.4 Proposed Campaign Operating Principles {#i.3.4-proposed-campaign-operating-principles .unnumbered}

-   Honesty, openness to differing points of view, and a willingness to
    answer questions will characterize the ongoing planning, operation,
    and evaluation of the campaign.

-   Trust and credibility will be earned and maintained by providing
    accurate and comprehensive information.

-   The campaign will be respectful of human rights and the dignity of
    affected people.

-   Persons who may have been exposed to radiation released from the
    Nevada Test Site will be involved in the development,
    implementation, and guidance of the campaign.

-   Campaign information will be accurate, scientifically sound, and
    will explain the uncertainties of current knowledge.

-   Information will be supportive, reflecting compassion and an
    understanding of scientific, medical, psychological, and ethical
    issues involved.

-   The campaign will consider the needs of underserved populations and
    will strive for social equity.

-   Efforts will be outcome-oriented.

    **I.3.5 List of Other Resources**

-   The NCI Fallout Report and all Campaign materials, including an
    individual dose/risk calculator can be found online at
    [www.cancer.gov/I-131](http://www.cancer.gov/cancerinfo/).

-   The IOM's review of the NCI report can be viewed online as well.
    Visit [www.nap.edu](http://www.nap.edu/) and enter 'Exposure of the
    American\*' in the "search all titles" field.

-   The National Research Council report referenced by Kristin
    Shrader-Frechette in her remarks, *Understanding Risk: Informing
    Decisions in a Democratic Society,* is also available at
    [www.nap.edu](http://www.nap.edu/) using the title search feature.

-   The Agency for Toxic Substances and Disease Registry Continuing
    Education Course for health care professionals, ***Case Studies in
    Environmental Medicine: Radiation Exposure from Iodine-131,*** is
    available on the ATSDR website.

Other valuable websites:

-   CDC's National Center for Environmental Health, Radiation Studies
    Branch homepage (includes links to Hanford Thyroid Disease Study):
    [www.cdc.gov/nceh/programs/radiation](http://www.cdc.gov/nceh/programs/radiation)

-   Hanford Community Health Project, an outreach and education
    initiative sponsored by ATSDR, provides educational information and
    materials about potential health risks to individuals who were
    exposed as young children to past releases of radioactive iodine
    (I-131) between 1944 and 1951 from the Hanford Nuclear reservation,
    in Washington State: http://www.atsdr.cdc.gov/hanford/

    The NCI publication *Making Health Communication Programs Work: A
    Planner\'s Guide, a resource for health communicators,* first
    published in 1989 and widely known as the \"Pink Book.\" The 2002
    updated version reflects recent advances in knowledge and
    technology, such as the Internet, that can affect the communications
    process. This handbook presents key principles and steps in
    developing and evaluating health communications program for the
    public, patients, and health professionals. It can be viewed online
    at [www.cancer.gov/pinkbook](http://www.cancer.gov/pinkbook). Print
    or CD-ROM copies can be ordered by calling 1-800-4-CANCER
    (1-800-422-6237) or online at <http://cancer.gov/publications>.

### I.4 Report of Key Findings: In-depth Interviews with Experts About I-131 Exposure from the Nevada Test Site {#i.4-report-of-key-findings-in-depth-interviews-with-experts-about-i-131-exposure-from-the-nevada-test-site .unnumbered}

**Prepared by:**

**Office of Cancer Communications**

**National Cancer Institute**

**31 Center Drive MSC-2580**

**Building 31, Room 10A03**

**Bethesda, MD 20892-2580**

**January 2000**

**I. INTRODUCTION AND METHOD**

The National Cancer Institute (NCI) and Centers for Disease Control and
Prevention (CDC) are designing a national campaign to implement
Institute of Medicine (IOM) recommendations to communicate to Americans
the potential health effects of Iodine-131\
(I-131) radiation released during atmospheric testing in Nevada during
the 1950s and 1960s. To inform this effort, NCI conducted 19 in-depth
interviews with individuals who have expertise in areas related to the
issue of nuclear fallout. The main objectives of this research were to
measure awareness level, concern, familiarity with, and evaluation of
the NCI Report and IOM recommendations about I-131 from the Nevada Test
Site, and to obtain recommendations about how to conduct a communication
campaign.

A working group consisting of NCI staff, CDC staff, and a panel of
community representatives generated a list of potential interviewees.
Individuals were suggested in a number of categories, including state
and local public health officials, community advocates (including
environmental, health, and pro-nuclear groups), scientific experts
(e.g., radiation scientists), health-oriented professional
organizations, veterans, health care providers (e.g., thyroid
specialists), and health educators.

The selection of interviewees was based on the following criteria: 1)
level of expertise; 2) an effort to obtain representation from all the
categories listed above; and 3) geographic diversity. The original
interviewee list was comprised of 29 contact names collectively agreed
upon by working group members. Interviews were completed with 19
interviewees. When an effort to contact a particular interviewee was not
successful, an alternate name was generally provided by working group
members. Alternates were selected from the same type of background as
the originally proposed interviewee.

In order to report the interview results in a way that incorporates the
contextual background of individuals, interviewees were separated into
three major reporting categories:

> **Public Health Officials:** Six government officials were interviewed
> in this category. Participants included those employed in public
> health departments in states with varying degrees of I-131 exposure
> from the Nevada Test Site and other representatives involved in
> radiation issues at the state level.
>
> **Advocacy Groups:** Seven individuals were interviewed in this
> category. Participants held a variety of positions in organizations
> dedicated to different issues associated with nuclear or radiation
> issues. Organizations were selected to represent a broad range of
> opinion. Included in this category were representatives of groups
> dedicated to radiation-exposed populations, the environment, and the
> advancement of nuclear science.
>
> **Scientific Experts:** Six individuals were interviewed in this
> category. Participants included both radiation and thyroid experts
> associated with a variety of institutions.

Interview questions were designed to measure awareness, concern and
opinions about what constitutes an appropriate outreach response (See
Attachment H-4-A for a copy of the interview instrument). It should be
noted that the interview guide was not followed verbatim, and language
was altered in some cases to be sensitive to the background and
expertise level of each respondent. Each interview lasted approximately
30 minutes.

It should also be noted that in-depth interviewing is a qualitative
research technique. Although the findings from this research can provide
useful detailed insights into the perceptions and views of different
organizations and experts involved with the I-131 fallout issue, they
cannot represent the views of all such groups or persons.

**II. KEY FINDINGS**

This section outlines the key/preliminary findings from the interviews.
Differences in responses between reporting groups are outlined
separately.

**A. Awareness and Concern**

-   **[For public health officials, the NCI report frames the boundaries
    of awareness.]{.underline}**

When asked what they knew about the potential health effects of the
Nevada Test Site, the majority of public health officials cited the NCI
study as their primary reference point. All agreed that thyroid cancer
or "the thyroid problem" was the main potential health outcome to be
concerned about. Although two officials mentioned other possible
conditions, like autoimmune illnesses and damage to other organs, they
qualified these statements indicating that the data and science were
only available on the thyroid cancer link. Only one official could name
other radioactive substances released from the site in addition to
I-131.

On a scale of one to ten, with one indicating "not at all severe" and
ten indicating "very severe," most officials gave the potential health
effects from the Nevada Test Site a fairly low severity rating of two or
three. Only one official gave it a relatively high rating of six.

None of the officials said their organization had a formal position on
I-131 exposure from the Nevada Test Site. One official, in a state with
some highly exposed counties, said they were "struggling" to determine
whether or not the potential risks justify a public outreach effort.

-   **[Advocacy groups have a far broader scope of
    concern.]{.underline}**

Fewer advocacy group participants mentioned the NCI report when asked
about their knowledge of the potential health effects of the Nevada Test
Site. Although most mentioned thyroid cancer and other non-cancerous
thyroid abnormalities as possible outcomes, a few participants also
mentioned leukemia. One representative said genetic mutations and birth
defects were also a possibility.

In addition to being concerned about more health effects, advocacy group
representatives were also more aware of other radioactive materials
emitted from the tests. The most frequently cited substances after I-131
were cesium, strontium, and plutonium. When asked which substances they
worried about the most, advocates said that all the substances posed
significant reasons for concern, but for different reasons. Some pointed
out the varying half-lives of the substances; several, for example,
talked about plutonium's ability to persist in the environment for long
periods of time. One representative took the opportunity to say that the
NCI report was "too narrowly and conveniently" focused on thyroid cancer
instead of on other more lethal cancers like leukemia, breast and bone
cancer that may be caused by other materials like strontium and cesium.

Advocates rated the severity of the health effects from the Nevada Test
Site much higher than did the public health officials. Most gave a
rating somewhere in the range of eight to ten. Only one respondent
thought differently. This participant, who refused to use the rating
scale, characterized the potential health effects from Nevada Test Site
exposure as 100 times more severe than an accident like Three Mile
Island or waste disposal sites, but much less severe than radiation
received from medical diagnostic tests.

All but two representatives said their organization had a position on
exposure from the Nevada Test Site. One representative said there needed
to be more education and research on the association between exposure
and non-thyroid disorders, particularly parathyroid disorders. Another
said the government needed to be more "forthright" and "conscientious"
in its efforts to inform the public. Others called for health care
provider education efforts and clinical screening and monitoring.
Although two representatives said their organization did not have a
formal or official position, they did say their organization generally
supports the cause of research and educational efforts conducted for the
benefit of exposed populations.

-   **[Concerns of scientific experts are defined by their evaluation of
    "the evidence."]{.underline}**

Scientific experts chose to focus primarily on the thyroid-cancer link
when asked what they knew about the health consequences of the Nevada
Test Site. Most made evaluative comments about the findings. The level
of detail provided about the relationship between I-131 and thyroid
cancer varied by the type of expert. Radiation experts provided much
more detailed information and critiques of the NCI data. One such expert
said, "I am aware that 10,000 to 75,000 new thyroid cancers will result
from these tests." Another radiation expert characterized the findings
as "statistically suggestive rather than significant." Strontium,
cesium, and plutonium were most frequently mentioned by radiation
experts as some of the other key radionuclides that were emitted from
the tests. One expert said I-131 should be paid the most attention
because it was the "main fallout product."

Thyroid experts had less detailed knowledge and seemed to retain only
the facts they felt were relevant to their concerns and practice areas.
These specialists were primarily concerned about the relationship
between I-131 and thyroid disorders and less interested in other health
effects. They were aware of the Nevada Test Site solely because of its
relationship to I-131 (an issue thyroid specialists are quite
knowledgeable about), since the site presents another potential avenue
of iodine exposure. These specialists expressed limited concern, stating
that exposure was found to be minimal for the most part and that thyroid
cancer is highly treatable.

Expert ratings of the severity of potential health effects were more
mixed than the other two interviewee groups. One radiation expert rated
the severity of the health effects as a one or a two, while another
rated it as an eight or nine. Many had difficulty providing unqualified
responses, probably due to their high knowledge levels. For example, one
radiation expert said the severity rating is dependent on geography,
giving a one for a person living in New York City and a four for a
person living in Utah. Thyroid specialists shared more commonality in
their ratings with most giving it a low rating of a one or two. One
specialist said the rating is dependent on age of exposure, giving it a
rating of five for a child and only a rating of one for an adult.

**B. Familiarity and Evaluation of NCI Report and IOM Action
Recommendations**

-   **[Public health officials are in agreement with findings and
    recommendations.]{.underline}**

All public health officials were quite familiar with the reports, and
most had a good working knowledge of risk factors and other specifics.
Officials in states with heavily exposed populations were more informed
than officials from states with less exposure. One official of a state
with areas of high exposure reported using the NCI data to conduct their
own state-level investigation. Two officials in less exposed states had
a more general level of knowledge about the NCI findings.

Overall, public health officials found the reports useful. Two officials
said the most useful information was the county-level exposure
information. Two others said the reports serve as good background pieces
about the relationship between I-131 and thyroid cancer and will be a
useful framework for thinking about other exposure sites throughout the
country. There were few suggestions for additional information. One
official said more definitive information on the risk associated with
I-131 exposure was needed to determine what the exposures really mean
from a health perspective. Another official thought information on the
relationship between I-131 exposure and non-cancerous thyroid disorders
would be important to have since there was a lot of "talk" about this
issue.

All officials agreed with the IOM position that screening would cause
more harm than good, due to the number of false positives. One
individual said screening was also not advisable because the exposure
findings were uncertain, and individuals would be better served if their
own doctor decided whether or not screening was appropriate for them.

Most public health officials thought the proposed strategy of educating
the general public and providing physicians with information to respond
to inquiries would be very effective. Some said this was important
because health care providers lack knowledge about the association
between iodine and thyroid disease. One individual said it would be
effective because people listen to and trust their doctors. Another
official thought that the strategy made sense but that the nature of the
information would be difficult for the public to understand.

-   **[Advocacy groups disagree more with findings and
    recommendations.]{.underline}**

Approximately two-thirds of the advocates said they were very familiar
with the NCI and IOM reports. The remaining one-third recalled major
pieces of information but without specifics. Advocacy group opinion
about the information in the reports was considerably more divided than
among public health officials. One representative said that some of the
exposure information was inaccurate and that there were more areas
listed as low-exposure areas than should be. Another representative held
the opposite view, saying that there were more high-exposure areas than
should be. A couple of representatives said the reports were useful in
the sense that there was an "admittance" of responsibility, and some
information was at least "out there." And another representative took
credit for pushing Congress to get the report "done in the first place."

Advocacy representatives were far less supportive of the IOM screening
recommendations than public health officials. Half thought screening for
thyroid cancer was necessary, and half agreed that it was not a
beneficial course of action. One individual supported the notion that
screening for thyroid cancer would result in too many false positives,
but felt screening for other disorders like hypothyroidism and
hyperparathyroidism should be conducted.

When asked how effective the IOM strategy of educating physicians and
the public would be, most advocates characterized the strategy as one
that would be "helpful." Two participants focused on the need to educate
physicians so patients will be "taken seriously" and will not have to
"educate their physicians." Only one participant felt the action would
be unnecessary and expressed doubt about the ability to educate
physicians who are "essentially lay people when it comes to nuclear and
radiation issues and lack technical knowledge and background."

-   **[Thyroid experts are in agreement, while radiation experts are
    more divided.]{.underline}**

While the radiation experts were very familiar with the NCI and IOM
reports and had examined them in detail, the thyroid specialists were
only vaguely familiar with the actual reports. Despite their uncertainty
about having read the reports, however, the thyroid specialists felt
certain that they understood the overall findings from other sources
like professional journals, newspapers, and presentations. In general,
they recalled that the exposure did not pose a very significant health
threat.

Those radiation experts who had read the reports found some information
useful and some not. While one expert said the reports were "most
inclusive and helpful," another said they were "inconclusive" because
the findings were "extrapolated from only 100 sites." Another expert
felt the information was useful, but needed to be translated in a way
that would make it possible for the lay public to understand. The lack
of "risk information" was "curiously avoided," according to another
expert.

The radiation experts were also divided on the issue of screening. One
agreed with the argument that "screening will do more harm than good."
Another agreed that it made no sense to screen the general population,
but did think the issue of screening high-risk populations needed to be
addressed. Another expressed agreement with not screening for thyroid
cancer, but thought looking into screening for other non-cancerous
thyroid disease was essential. The thyroid specialists were less
divided, all indicating that wide-scale screening for thyroid cancer
would result in too many false positives and could result in harm to the
patient in terms of unnecessary surgical procedures.

Most experts thought the action recommended by the IOM would be very
effective. Their reasons for thinking this strategy would be effective
were similar to those of the other groups. Explanations provided were
that physicians lack knowledge and have direct patient contact, while
patients for the most part feel comfortable with their doctors. One
expert said the strategy would be only "moderately effective" because
physicians may not take the time to review the information provided and
because not everyone has health insurance and/or is under the care of a
physician.

**C. Educational Efforts: What's Needed?**

-   **[Public health officials think risk factors should determine the
    focus and scope of the campaign.]{.underline}**

When asked if the entire U.S. needs to be the target of an educational
effort or if the effort should be confined only to those most heavily
exposed, officials answered in accordance with their understanding of
the risk factors and exposure patterns. One official thought the
campaign could be focused on those who were children at the time and
drank milk from a backyard goat or cow since these individuals were most
at risk. Another official thought everyone should be given information,
but the campaign should be more aggressively focused on those at higher
risk. Those who thought a campaign would need to target the whole
population grounded their opinions on the premise that it would be
difficult to "find" everyone at high risk due to factors like mobility
and storm and wind patterns.

By far, the most important information that officials thought needed to
be provided to people is a profile of the risk factors. One official
thought such a profile, along with an 800 number for those who need more
information, would be a good idea since it is so difficult to separate
out those who need to be concerned from those who don't.

-   **[Advocacy groups say a "right to know" argument
    prevails.]{.underline}**

A majority of advocates said a national campaign was needed because
citizens have "a right to know" about the actions of their government.
For example, one advocate said, "Everyone should know that this was done
without our knowledge" because "the government has no right to
contaminate us." Another said information should not be "denied to
people," but qualified the response by saying it would be difficult to
really get the information to everyone because a "large portion of the
public is apathetic," especially when something seems so "far away."
Some thought a general public information campaign was needed along with
a more targeted and aggressive effort to ensure that high-risk groups
are reached. Only one advocacy group representative thought that little
needed to be done; this individual expressed the view that something
"had to be done" because the issue had become "so political," but
thought that the campaign should be very targeted to those at highest
risk.

In addition to providing information on risk factors, advocates often
mentioned a need to translate the information into a format that people
can understand. One said people need to be provided with a listing of
symptoms that may signal a thyroid problem so they can ask their doctor
for a blood test or ultrasound. Another said people needed all the
information required to calculate their own dose.

-   **[Scientific experts propose solutions mixed with some worry about
    invoking "unnecessary" fear.]{.underline}**

Although solutions proposed by scientific experts varied, more
participants in this group than others expressed concern about the need
to present information in a way that does not provoke anxiety or panic
on the part of the public. The thyroid specialists frequently made this
argument and expressed a preference for a targeted "talk to your doctor"
type approach, especially aimed at those who were children at the time
of exposure. One specialist thought it would be important to assure
people that the NCI study was a "very carefully run study so they should
not be afraid."

Radiation experts were more divided. One expert thought the "right to
know" demanded a national campaign. This individual characterized the
notion of a targeted campaign as a scientific impossibility because it
would be too difficult to "find" the people most heavily affected.
Another felt the information was already "out there" for people who
needed to find it. He said that "the advocates do a good job of letting
people know who need to know" and any further effort will start a public
panic."

**D. Participant Recommendations for How to Conduct a Campaign**

-   **[The majority of participants are in consensus about campaign
    "how-to's."]{.underline}**

Although there was much disagreement about the appropriate scope and
focus of a potential educational information campaign, a high degree of
consensus emerged on how a campaign would be best implemented.

-   Most participants said that such a campaign would need to be
    conducted at a national level with significant use of mass media.
    Even many of those who thought more targeted campaigns were
    appropriate "back-tracked" a little here, realizing that a national
    effort may be needed in order to "find" everyone.

-   Providing information about exposure and risk was seen as important;
    dose information, as less so. A substantial amount of concern was
    expressed about the use of risk comparisons because they may tend to
    trivialize the issue.

-   By far, participants across all three groups thought a coalition of
    different types of organizations (government, advocacy groups, and
    non-profits) should implement the campaign.

-   The belief that a coalition was needed to counteract a lack of
    public trust in government and lend credibility to the campaign was
    expressed far more often by advocates than by public health
    officials and scientific experts.

-   State public health officials thought their departments could play
    valuable coordinating roles at the state and local levels.

-   In terms of federal government participation, there was little
    preference for which agency(ies) should lead the effort. It became
    apparent throughout many of the interviews, particularly with
    advocates, that individuals do not make distinctions between various
    federal agencies \-- for example, CDC, NCI, the Department of Energy
    (DOE), or the Environmental Protection Agency (EPA). Many think of
    the "government" as an all-encompassing entity. When participants
    did make agency recommendations, NCI and CDC were the most
    frequently mentioned.

-   Participants thought a variety of materials and resources would be
    helpful to their organizations: fact sheets, information kits,
    videos, in-person meetings, conferences and web-based materials.
    Web-based information was very appealing; videos and in-person
    meetings, somewhat less so.

Attachment I-4-A OMB #0925-0046

Exp. Date: 8/31/00

**INTERVIEW GUIDE FOR IN-DEPTH INTERVIEWS**

**ABOUT I-131 EXPOSURE FROM THE NEVADA TEST SITE**

**November 1999**

**I. INTRODUCTION (3 MINUTES)**

Hello, my name is \_\_\_\_\_\_\_\_\_\_ from Porter Novelli, and I'm
calling on behalf of the National Cancer Institute and the Centers for
Disease Control and Prevention. These organizations are currently
working to develop educational efforts to address health effects that
may be related to nuclear fallout from an atomic weapons testing program
conducted in Nevada in the 1950s and 1960s. Do you have approximately 30
minutes so that I can talk with you about health issues related to the
Nevada nuclear tests?

\[IF YES, CONTINUE. OTHERWISE, TRY TO RESCHEDULE FOR ANOTHER DAY AND
TIME.\]

If it is alright with you, I would like to audio-record this discussion
because everything you say is important. All of your comments will be
kept confidential, and your responses will never be connected to your
name or organization.

**IA. ORGANIZATIONAL DEMOGRAPHICS (4 MINUTES)**

First of all, I'd like to understand more about your organization.

1\. What is your organization's mission and goals?

2\. Who or what does your organization represent?

3\. Does your organization have membership? Approximately how many
members do you have?

4\. Does your organization have any other core audiences or
stakeholders?

5\. How do you typically communicate with your audiences?

**II. AWARENESS AND CONCERN (5-10 MINUTES)**

1\. What nuclear or radiation issues are you involved with or concerned
about?

> PROBE for both locations (e.g., Hanford, etc.) as well as different
> types of radiation.

2\. I'd like to talk specifically about the Nevada nuclear bomb tests
now. What knowledge do you have about the Nevada tests and their
consequences? What about health effects specifically?

> PROBE: Potential cancer-related health effects?
>
> Non-cancer-related effects?

3\. Overall, on a scale of 1 to 10 (with 1 meaning not severe at all and
10 meaning very severe), how severe do you think the possible health
effects of the Nevada nuclear bomb tests are? (INTERVIEWER NOTE: Collect
professional/organizational perspective rather than personal.)

4\. How would you rate the severity of these effects in relation to
other nuclear or radiation issues that you are concerned about on a
scale of 1 to 10? (INTERVIEWER NOTE: Collect professional/organizational
perspective rather than personal.)

5\. About 100 nuclear bomb tests were carried out in Nevada in the 1950s
and 1960s. These tests released different types of radioactive material
into the atmosphere. Which of these radioactive materials are you aware
of?

> IF AWARE OF MORE THAN ONE MATERIAL: Are you concerned about some of
> these radioactive substances more than others? Why?
>
> Before proceeding, I'd like to provide you with some additional
> background. One of the radioactive materials released from the Nevada
> tests was Iodine 131, commonly referred to as I-131. As you are
> probably aware, some epidemiological studies have found an association
> between exposure to I-131 and the risk of thyroid cancer. In addition,
> I-131 may also be related to other types of thyroid disease, such as
> hypothyroidism or an underactive thyroid gland, hyperparathyroidism, a
> condition in which the parathyroid glands located next to the thyroid
> become overactive, and noncancerous thyroid growths. While everyone in
> the United States experienced some exposure to the I-131 fallout,
> those in areas adjacent to the Nevada Test Site, downwind, and in
> other areas of the country where wind patterns served to increase
> fallout were most heavily exposed. These risks may be highest for
> young children who drank milk and lived in high fallout areas during
> the time of the tests.
>
> \[INTERVIEWER NOTE: Read high-exposure state list only if interview
> asks about the heavily affected region: Some adjacent states with high
> county exposure rates are Colorado, Idaho, Kansas, Minnesota,
> Missouri, Montana, Nebraska, Nevada, South Dakota, Utah.\]
>
> In 1997 and 1999, two documents regarding the Nevada tests were
> released to the public. The National Cancer Institute or NCI released
> results of a study that assessed U.S. residents' possible exposure to
> radioactive Iodine-131 fallout during and shortly after the nuclear
> bomb tests.
>
> In addition, the National Academy of Science's Institute of Medicine
> or IOM released a review of the NCI's methods and findings. This
> review also included recommendations on educating the general public
> about I-131 and advising physicians on how to approach patients who
> may have questions about I-131.

6\. How familiar are you with the NCI and IOM reports, if at all?

7\. If FAMILIAR: Do these reports provide your organization with the
information you need to communicate with your key audiences about this
issue?

> IF YES, PROBE: What information is useful?
>
> IF NO, PROBE: Why haven't the reports been useful?

8\. Aside from what is provided by the NCI and IOM reports, what else
does your organization know about this issue?

> PROBE: Where has your organization gotten that information?
>
> How has that information been useful?

9\. What additional information do you need to understand the issues
involved with I-131?

10\. Does your organization have a position on the issues surrounding
I-131 exposure from the Nevada Test Site?

> IF YES: What is that position?
>
> What specific concerns about I-131 exposure does your organization
> have?

**III. EDUCATIONAL EFFORTS (10-15 minutes)**

1\. Residents of the U.S. were not uniformly exposed to I-131 fallout.
In addition to factors such as geography and residential history, the
dose of radiation individuals may have received varies by other factors,
like age and dietary patterns.

> In your opinion, who needs to be informed about the possible risks of
> associated with the I-131 emitted by the nuclear tests? Should
> everyone in the U.S. be the focus, or should information be more
> targeted to those who may have been more heavily exposed?
>
> \[INTERVIEWER NOTE: Read high exposure state list only if interview
> asks about the heavily affected region: Some adjacent states with high
> county exposure levels are Colorado, Idaho, Kansas, Minnesota,
> Missouri, Montana, Nebraska, Nevada, South Dakota, Utah\]

2\. What information do you think people who were heavily exposed need
about I-131?

> IF THEY BELIEVE GENERAL PUBLIC SHOULD BE INFORMED: Which of these
> types of information do you think the general public should know?

3\. Now I'm going to read you a list of different types of educational
information that could be provided. Please rate how helpful each would
be on a scale from 1 to 5 with 1 meaning not helpful at all and 5
meaning very helpful.

> a\. Potential exposure levels based on factors like geography and age
>
> b\. Dose information, an estimate of the amount of radiation actually
> absorbed by the thyroid)
>
> c\. Risk information about potential health effects
>
> d\. Risk comparisons, which quantify risk levels in various contextual
> ways to aid understanding
>
> e\. Information about scientific uncertainties surrounding the
> estimates and associations between cause and effect

4\. What do you think would be the most effective way to reach these
populations?

> PROBE: Should education be conducted on a national, regional or local
> level?
>
> Why?

5\. The IOM report concludes that the available science does NOT warrant
routine clinical screening for thyroid cancer in the general population
or within subgroups of the population as an intervention strategy. Do
you think that the general population or any groups within the
population need to be screened? Why or Why not?

> The IOM report suggests that the general public be targeted with
> educational information about their possible exposure to I-131 from
> the nuclear bomb test fallout. It also suggests that information be
> provided to health care providers so they can answer any questions
> that members of the public may ask them about the fallout and
> potential health consequences such as thyroid cancer.

6\. How effective do you think this approach would be in educating the
general public about I-131 fallout from the nuclear tests at the Nevada
Test Site? Why?

7\. What else, if anything, do you think would need to be done to better
educate the general public about the issue of I-131 exposure?

8\. Overall, who do you think should implement these efforts? Who should
NOT conduct them?

> PROBE: Government agencies, non-profit organizations, or advocacy
> groups? National, regional, state, or local level?
>
> IF FEDERAL GOVERNMENT AGENCIES: Which government agencies do you think
> should implement the efforts? (PROBE: CDC, EPA, NCI, DOE)
>
> (INTERVIEWER NOTE: If regional, state, or local organizations are
> suggested, collect information that would be useful for future
> contact.)

9\. Would your organization want to play a role in efforts to educate
the public about possible I-131 exposure from nuclear tests conducted at
the Nevada Test Site?

> IF YES: Which publics or groups would your organization want to play a
> role in educating?
>
> What would that role be?
>
> How would that role fit in with your organization's mission, goals,
> values, and activities?

10\. Now, I'm going to read you a list of materials. Please indicate on
a scale from 1 to 5 how helpful each would be to your organization (with
1 meaning not helpful at all and 5 meaning very helpful).

> a\. Stand-alone materials such as brochures and fact sheets
>
> b\. Information kits
>
> c\. Videos
>
> d\. In-person meetings
>
> e\. Conferences/group meetings
>
> f\. Web-based materials
>
> g\. Would any other types of materials be helpful?

**IV. CLOSING (2 MINUTES)**

Thank you very much for speaking with me today. NCI and CDC are working
together on this project to provide information on this issue to the
public and health care providers. If you have any questions or if you
would like to receive materials about the Nevada tests and I-131
fallout, please call Kelli Marciel at the National Cancer Institute at
301-496-6667.

### I.5 Key Focus Group Findings on I-131 Exposure from the Nevada Test Site: Preliminary Findings from Public and Physician Groups {#i.5-key-focus-group-findings-on-i-131-exposure-from-the-nevada-test-site-preliminary-findings-from-public-and-physician-groups .unnumbered}

**Prepared by:**

**Office of Cancer Communications**

**National Cancer Institute**

**31 Center Drive MSC-2580**

**Building 31, Room 10A03**

**Bethesda, MD 20892-2580**

**January 2000**

**KEY FOCUS GROUP FINDINGS ON I-131 EXPOSURE FROM THE NEVADA TEST SITE:
PRELIMINARY FINDINGS FROM\
PUBLIC AND PHYSICIAN GROUPS**

**[Table of Contents]{.underline}**

> **[Page]{.underline}**

**I. INTRODUCTION** I-70

**II. METHODOLOGY** I-70

**III. KEY FINDINGS** I-73

A. Lower-Exposure Public I-74

B. Higher-Exposure Public I-78

C. Primary Care Physicians I-81

**IV. ATTACHMENTS** I-86

A. Participant Screening Questionnaires

B. Moderator's Topic Guides

**I. INTRODUCTION**

> The National Cancer Institute (NCI) and Centers for Disease Control
> and Prevention (CDC) are designing a national campaign to implement
> Institute of Medicine (IOM) recommendations to communicate to
> Americans the potential health effects of Iodine-131 (I-131) radiation
> released during atmospheric testing in Nevada during the 1950s and
> 1960s. To inform this effort, Office of Cancer Communication (OCC)
> conducted six focus groups during December 1999 with members of the
> higher-exposure public, the lower-exposure public, and primary care
> physicians. Primary objectives of this research were:

-   To gauge participants' awareness and knowledge of I-131 radiation
    fallout from the Nevada Test Site (NTS), as well as the potential
    risk for thyroid cancer and other non-cancerous thyroid conditions
    resulting from this exposure;

-   To determine whether participants perceive themselves or anyone else
    as being at-risk for health problems resulting from I-131 exposure
    and, if so, how concerned participants are about such risk;

-   To evaluate participants' reactions to IOM recommendations which
    discourage mass screening for thyroid cancer, but advocate for an
    educational campaign to communicate to Americans the potential
    health effects of I-131; and

-   To gain a better understanding of the information needs and wants of
    the general public and health care professionals.

> Preliminary findings from the focus groups are presented in this
> report. These findings will be used to help determine the direction
> and scope of further research for the campaign.

##### II. Methodology  {#ii.-methodology .unnumbered}

> **Audience Segments**
>
> A total of six focus groups were conducted with three audience
> segments, referred to as the "higher-exposure public," the
> "lower-exposure public," and "physicians." The higher-exposure public
> was defined as adults ages 39-64 who had lived in at least one of 18
> states exposed to high levels of I-131 for at least 5 years from birth
> to age 15.[^7] The lower-exposure public was defined as adults 34-64
> years of age who had NOT lived in one of the 18 higher-exposure states
> from birth to age 15. Conducting research with both the higher- and
> lower-exposure public was done to obtain a preliminary sense of how
> risk status might affect one's awareness, knowledge, and concerns
> about the Nevada Test Site and I-131 health implications.
>
> Physicians were defined as general practitioners, family physicians,
> or general internists who had been practicing medicine for at least
> three years in a high-exposure state. The three-year criterion ensured
> that physician participants had been in practice long enough to have
> some chance of seeing patients with radiation issues or health
> effects, and that they had been practicing in the surrounding area
> long enough to be familiar with their communities. Research was
> conducted with primary care physicians, because past research has
> shown that they are the most trusted source of both health care and
> health information.
>
> A total of 51 people participated in the focus groups: 33 were members
> of the higher-exposure or lower-exposure public and 18 were
> physicians. The six focus groups were structured as follows:

+----------------+-----------------+----------------+-----------------+
| ##### Loca     | **Date and      | **Audience     | **Number of     |
| tion {#locatio | Time**          | Segment**      | Participants**  |
| n .unnumbered} |                 |                |                 |
+----------------+-----------------+----------------+-----------------+
| Philadelphia,  | December 7,     | Lower-exposure | 9               |
| PA             | 1999            | public         |                 |
|                |                 |                |                 |
|                | 6:00-7:30 PM    |                |                 |
+----------------+-----------------+----------------+-----------------+
| Philadelphia,  | December 7,     | Lower-exposure | 7               |
| PA             | 1999            | public         |                 |
|                |                 |                |                 |
|                | 8:00-9:30 PM    |                |                 |
+----------------+-----------------+----------------+-----------------+
| Omaha, NE      | December 13,    | H              | 9               |
|                | 1999            | igher-exposure |                 |
|                |                 | public         |                 |
|                | 5:30-7:00 PM    |                |                 |
+----------------+-----------------+----------------+-----------------+
| Omaha, NE      | December 13,    | Physicians     | 9               |
|                | 1999            |                |                 |
|                |                 |                |                 |
|                | 7:30-9:00 PM    |                |                 |
+----------------+-----------------+----------------+-----------------+
| Burlington, VT | December 14,    | H              | 8               |
|                | 1999            | igher-exposure |                 |
|                |                 | public         |                 |
|                | 5:30-7:00 PM    |                |                 |
+----------------+-----------------+----------------+-----------------+
| Burlington, VT | December 14,    | Physicians     | 9               |
|                | 1999            |                |                 |
|                |                 |                |                 |
|                | 7:30-9:00 PM    |                |                 |
+----------------+-----------------+----------------+-----------------+

> **Focus Group Sites**
>
> The higher-exposure public and physicians groups were conducted in two
> states exposed to higher levels of I-131 radiation. Omaha, NE, was
> chosen because of its close proximity to the Nevada Test Site, and
> Burlington, VT, was included because it is farther away from the site.
> These locations were selected to provide an initial reading of whether
> geographic proximity to the Nevada Test Site would affect focus group
> responses, particularly perceived risk to health problems due to I-131
> exposure. The lower-exposure public groups were held in Philadelphia,
> PA, a lower-exposure state.
>
> **Participant Recruiting Criteria**
>
> Higher-exposure and lower-exposure individuals were recruited in
> advance of the focus groups. The screening questionnaire was designed
> to separate out people with a personal history of thyroid cancer or
> disease, individuals having an immediate family member with a history
> of thyroid disease, or individuals who self-reported that they were
> familiar with the issue of radioactive fallout from nuclear testing.
> The reason for excluding these individuals was the desire to talk with
> people for whom the I-131 issue is not already salient because of
> personal knowledge or experience. Clearly, any information campaign
> which is developed will have to address those who are already
> concerned about the issue, but it will also need to address the
> concerns and information needs of a potentially much larger number of
> people who will become aware (through the campaign) they may have a
> health risk due to I-131 exposure. It is this latter group -- those
> not already knowledgeable or savvy about their potential risk -- that
> the focus groups sought to speak with[^8].
>
> In addition to the above criteria, the screening criteria ensured that
> the groups would contain a mix of women and men, a mix of races, and
> participants whose educational levels ranged from a high school
> graduate through college graduate. Copies of the recruitment screeners
> for the public and physician groups can be found in Attachment A.

+-------------------------------+------------+------------+------------+
|                               | **Number   | **Number   | **Number   |
|                               | of         | of         | of         |
|                               | Part       | Part       | Part       |
|                               | icipants** | icipants** | icipants** |
|                               |            |            |            |
|                               | *          | **(Lower-e | *          |
|                               | *(Higher-e | xposure)** | *(TOTAL)** |
|                               | xposure)** |            |            |
+-------------------------------+------------+------------+------------+
| #####                         |            |            |            |
|  Gender {#gender .unnumbered} |            |            |            |
+-------------------------------+------------+------------+------------+
| > Female                      | 8          | 9          | 17         |
+-------------------------------+------------+------------+------------+
| > Male                        | 9          | 7          | 16         |
+-------------------------------+------------+------------+------------+
| ##### Race or Ethnicity {#r   |            |            |            |
| ace-or-ethnicity .unnumbered} |            |            |            |
+-------------------------------+------------+------------+------------+
| > White                       | 11         | 11         | 22         |
+-------------------------------+------------+------------+------------+
| > Black                       | 4          | 5          | 9          |
+-------------------------------+------------+------------+------------+
| > American Indian             | 2          | 0          | 2          |
+-------------------------------+------------+------------+------------+
| ##### Educa                   |            |            |            |
| tion {#education .unnumbered} |            |            |            |
+-------------------------------+------------+------------+------------+
| > High school degree          | 3          | 5          | 8          |
+-------------------------------+------------+------------+------------+
| > Some college or technical   | 8          | 8          | 16         |
| > school                      |            |            |            |
+-------------------------------+------------+------------+------------+
| > College degree              | 5          | 3          | 8          |
+-------------------------------+------------+------------+------------+
| > Not specified               | 1          | 0          | 1          |
+-------------------------------+------------+------------+------------+

> **Topic Guide Development**
>
> The moderator's guides for the general public and physicians' groups
> were designed to: a) measure initial awareness, knowledge and concern
> about the Nevada nuclear testing in the 1950s and 1960s; b) assess
> reactions to information presented during the groups about the I-131
> exposure and its possible relationship to thyroid cancer and other
> non-cancerous thyroid disease; and c) gather opinions about the IOM
> screening recommendations as well as suggestions about implementing a
> communication campaign.
>
> After participants were asked about their general awareness, knowledge
> and concern, they were shown a newspaper article from the *Chicago
> Sun-Times* dated August 2, 1997, along with a fact sheet and map
> illustrating exposure patterns across the U.S. They were then asked
> questions to elicit their reaction to the information. The newspaper
> article was selected from a sample of press coverage appearing after
> the release of the NCI report, "Estimated Exposures and Thyroid Doses
> Received by the American Public from Iodine-131 in Fallout Following
> Nevada Atmospheric Nuclear Bomb Tests." Potential articles were judged
> on their objectivity in communicating basic facts about the I-131
> exposure and its potential relationship to thyroid cancer.
>
> Each focus group was two hours in length and was conducted by a male
> moderator in his forties. Participants were paid for their
> participation. A copy of the topic guide, as well as the stimulus
> materials, can be found in Appendices B and C.
>
> **Limitations**
>
> It should be noted that focus groups are a qualitative research
> technique which provide useful, detailed insights into the target
> audience's perceptions and motivations. Findings from qualitative
> research, however, cannot be projected to a larger audience. Rather,
> they are intended to provide guidance and direction in determining the
> best approach for communicating with key audiences about cancer risk
> research. In addition, findings from focus groups should be considered
> preliminary, laying the groundwork for further research with key
> target audiences.

##### III. KEY FINDINGS {#iii.-key-findings .unnumbered}

> The remainder of this report presents the main findings from the focus
> groups. Findings related to the lower-exposure public, the
> higher-exposure public, and the physicians' groups are presented
> separately in order to give the reader an overall profile of each
> audience. However, it should be noted that there were many
> similarities across the three audience segments, particularly between
> the lower- and higher-exposure groups.
>
> **A. Lower-Exposure Public**
>
> [Awareness, Knowledge & Concern **Before** Reading Newspaper Article
> and Fact Sheet]{.underline}

-   Participants were concerned about a broad range of environmental
    concerns, including noise and water pollution, trash disposal, power
    plants, power lines, exhaust from vehicles, and "radiation" from
    computers.

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-   Participants were generally aware or had some vague recollection of
    the tests conducted at the Nevada Test site. The tests in Nevada
    were brought up by a few participants and then seemed to "ring a
    bell" for others who indicated a vague awareness of them.

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-   Several participants in each group knew the tests were conducted
    around the time of the 1950s or 1960s, but one thought tests had
    continued throughout the 1980s.

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-   Although participants were aware of the Nevada Test Site, they had
    little specific information about where their knowledge came from.
    No one knew about the NCI or IOM reports, or any other government
    reports on the issue. A couple of participants recalled seeing a
    movie about the Nevada Test Site called "Black Rain." Other
    participants mentioned television, and one got more specific and
    mentioned documentaries on programs like *Nova* and *60 Minutes*.

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-   None of the participants had specific knowledge of different types
    of radiation or radiation-induced health effects. Most expressed
    health concerns about "deformities" or "genetic alterations." One
    participant said the tests left people "crippled." Another said it
    could cause skin problems similar to those that resulted from "Agent
    Orange." Participants were particularly concerned about
    radiation-related illnesses being "passed through the genes."

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-   Participants felt little or no concern that they would suffer any
    negative health effects from the Nevada tests. Most did not consider
    themselves to be at risk and felt it was more of a concern for other
    people. One participant said, "If I lived out there I'd be
    concerned." Another said it was a problem for "those military people
    who were there at the time."

> [Concerns & Perceptions of Risk **After** Reading Newspaper Article
> and Fact Sheet]{.underline}

-   Participants were provided with a newspaper article and additional
    facts regarding the association between the Nevada tests and thyroid
    cancer, risk factors that increase the likelihood of exposure,
    examples of higher and lower exposure areas, and possible
    associations between I-131 and two other types of non-cancerous
    thyroid disease: hypothyroidism and hyperparathyroidism. Questions
    were then asked to gauge their level of concern, perceptions of
    risk, and opinions about actions that should be taken.

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-   The newspaper article and fact sheet raised levels of suspicion
    among many respondents. When asked about their initial reaction to
    the materials, many made comments like "there must be a big lawsuit
    coming" or referred to the newspaper article as a "scare tactic" no
    different from what they usually see in the news.

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-   Responses to the actual content of the material varied and included
    responses such as "frightening," surprise about the fact that
    "everyone was exposed" or the problem was so "widespread" and
    feelings of "sadness because children were affected." Others said
    the information was just "another thing to worry about."

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-   Even after reading the newspaper article and fact sheet,
    participants still did not feel a high level of personal concern
    about their risk of thyroid cancer or other non-cancerous thyroid
    disease from the Nevada Test Site 1-131 exposure. A few said there
    were more important health risks to worry about like stroke and
    heart attack. One respondent who stated that she has hypothyroidism
    said the information made her wonder about the possible connection
    to the Nevada Site, but even she did not seem overly concerned.
    Another said that the radiation had a "short half life" and no
    longer posed a risk because it was "long gone."

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-   When asked who is most at risk, participants thought the exposure
    posed a significant problem primarily to people living closer to the
    site. One said it was just not "plausible" that the radiation could
    cause problems in people thousands of miles away, and the rest of
    the group agreed. One person emphasized that she was still concerned
    about "other people being sacrificed."

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-   Few participants seemed to make the connection that *they* are the
    people who were children at the time of the tests and therefore at
    some level of risk. The length of time that has passed since the
    tests occurred and the aging of those who may be at greater risk
    seemed to make this a difficult concept for people to comprehend.

> [Actions Needed]{.underline}

-   While some participants said they would like more information about
    I-131 exposure from the Nevada Tests, few seemed to want it out of
    concern for their own health. Most wanted more information in order
    to clear up what they perceived as discrepancies in the newspaper
    article. More participants in the first group wanted additional
    information than did those in the second group. A few participants
    said they didn't want more information because the issue "does not
    affect me" or "it is someone else's problem." One participant said
    it was like "AIDS" in the sense that "sometimes you just don't want
    to know if you have a problem or not."

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-   Among the few who wanted more information, interest focused
    primarily on more conclusive information on the association between
    I-131 and development of thyroid cancer, why the study took 14
    years, and why it was still going to take more time to know whether
    people are "going to get cancer from the tests or not."

-   In general, thyroid screening and the false positives associated
    with screening were difficult concepts for people to understand.

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-   Reactions to the IOM recommendation not to conduct screening were
    mixed. Reasons for not supporting the IOM recommendation included
    statements like "If there is anything the government can do, it
    should be done" or "It sounds like the government is copping out."
    Participants who supported screening stressed the individual's right
    to choose, rather than concern about whether they themselves should
    (or might elect to) be screened.

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-   Proponents of the IOM recommendation expressed other views. One
    participant said screening would just cause a "panic." Another
    suggested screening in "limited areas." And one, who inaccurately
    thought cancer could be detected by a blood test, kept asserting
    that blood tests should be conducted because they would not cause
    anyone any harm.

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-   Regardless of whether or not they agreed with the IOM screening
    recommendation, many thought each individual should have the final
    say in whether or not to be screened.

> [Educational Effort: Who Should Conduct It?]{.underline}

-   Most participants thought government should be involved in an
    educational effort because the government was "responsible" for what
    happened. Many individuals thought the American Cancer Society would
    be appropriate. Other groups mentioned included the Red Cross,
    Greenpeace, local and city health centers and other medical groups.
    A few thought a combination of government and non-government groups
    would be best.

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-   When asked what organizations should not be involved, some said the
    federal government because it "caused the problem" and therefore
    would not be trusted. A few said that only the part of government
    which caused the problem (i.e., "the military") should not be
    involved. One participant expressed distrust of the Environmental
    Protection Agency (EPA) and said that agency should not take part.

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-   When probed about the appropriateness of the National Cancer
    Institute's involvement in an educational effort, participants said
    they had never heard of the institute. One participant said he
    thought the National Cancer Institute might be part of the National
    Institutes of Health, which may be associated with Johns Hopkins.
    Another participant then said the National Institutes of Health was
    a "research organization" that might be affiliated with that "group
    out of Atlanta," prompting another respondent to mention the "CDC."

> [Ethical Considerations]{.underline}

-   Participants were generally divided over whether there was good
    reason for conducting the Nevada bomb tests during the 1950s and
    1960s. Some said the tests were necessary to ensure the safety of
    Americans during the Cold War. Others said that it is "never right
    to sacrifice anyone" and that the nuclear testing "should not have
    been done because of the problems it caused." One participant also
    mentioned that the public could have been better protected from the
    radiation fallout at the time of the nuclear testing.

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-   Several participants expressed the opinion that "the government" (no
    agency specified) will always keep secrets and will never disclose
    the "full story" about nuclear testing pertaining to the past,
    present, or future.

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-   A couple of participants said that, in addition to being informed
    about the Nevada bomb testing and its resultant health effects, they
    would want assurance that nuclear testing would never happen again.
    Most of the other participants, however, took the viewpoint that the
    nuclear testing was over and that nothing could be done about it. In
    the words of one participant, "You can't right a wrong."

> **B. Higher-Exposure Public**
>
> [Awareness, Knowledge & Concern **Before** Reading Article and Fact
> Sheet]{.underline}

-   Participants expressed a broad range of general concerns about
    environmental hazards, from air and water pollution to lead paint,
    but provided few specifics. One participant said she was worried
    about "carcinogens\...that are just everywhere nowadays."

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-   Participants had little knowledge about nuclear testing in general
    or the Nevada Test Site in particular. A few participants could name
    locations in the U.S. where nuclear testing has been conducted,
    including "the Pacific," "the West," and the state of Nevada. A
    couple of these participants thought testing was still going on in
    these locations. Only a few recalled specific dates of the nuclear
    testing, expressing a vague recollection that "there was some
    nuclear testing that went on in the 1950s and 1960s." Participants
    had no specific knowledge of different types of radiation or
    radiation-induced health effects from the Nevada Test Site. Several
    expressed the view that the government has kept secrets about
    nuclear testing.

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-   Most participants could not recall the source of their information
    about the Nevada nuclear tests. A few vaguely recalled hearing
    something in "the news" or through "a documentary." One participant,
    for example, recalled seeing a program on the History Channel that
    "had something to do with radiation exposure and military men."
    Another said she thought the Discovery Channel might have run a
    documentary about the issue in the not too distant past. Another
    participant remembered some media coverage happening "when people
    were invited to watch some above-ground testing with special
    glasses." Although she couldn't recall the specifics, she
    characterized the event as "a real big deal."

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-   Participants initially expressed little concern about suffering any
    negative health effects from the Nevada tests. One participant,
    describing the tests as "underground tests," said he hoped the
    people conducting the tests now were protecting the environment to
    avoid any "contamination of the atmosphere or water supply." Another
    participant responded by saying it was more important to be
    concerned about the effects of such tests on people and animals than
    the environment. Another emphasized that people should worry more
    about the present than the past. One Vermont participant expressed
    little concern because of living far away from the Nevada Test Site
    (Note: this perception later changed when participants saw a map
    illustrating that radiation fallout had been carried from the West
    to the East).

> [Perceptions of Personal Risks & Concerns **After** Reading Article
> and Fact Sheet]{.underline}

-   Prior to seeing the article and fact sheet, participants were asked
    whether they remembered hearing anything in the news about two years
    ago. None remembered anything too specific. A couple of participants
    said they remembered hearing something, but they either could not
    recount the details or mentioned other events such as the nuclear
    testing in India and Pakistan.

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-   The newspaper article and fact sheet initially evoked an emotional
    reaction from some participants. Some Nebraska and Vermont
    participants said they were "shocked" and that the information made
    them feel "unsafe." However, these emotional reactions dissipated
    quickly after the first few minutes of conversation.

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-   When asked who in the population is most at risk, most participants
    in Nebraska and Vermont immediately noted that people living in
    their own geographical areas were exposed, often referring to the
    color map of exposure levels. Comments like, "We are in the red" or
    "It is right over us" were fairly frequent during the course of the
    groups. Few participants, however, fully comprehended that they
    might also be at risk because they were children at the time of
    testing and may have consumed contaminated milk.

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-   Despite some initial surprise over seeing the "red spots," personal
    concern about developing cancer or non-cancerous thyroid disease was
    minimal. Most participants said they were not too concerned because:

-   They cannot change the past

-   They need to focus on the future

-   They question the credibility of some of the information in the
    article

-   They need more information to determine their true risk

-   It would be difficult to prove that any thyroid occurrence is
    actually caused by I-131 exposure

-   They have other more immediate health concerns such as heart
    disease, high blood pressure, prostate cancer, and breast cancer

-   They have other (non-health) concerns such as neighborhood violence

-   Thyroid problems have not surfaced thus far after routine checkups

-   The chances of getting thyroid cancer are small

> As one participant explained, "I'm sure we probably read about these
> nuclear tests at one time but then forgot about them. It's not the
> 'here and now.' The only reason we are thinking about it now is
> because you are making us think about it."

-   The issue of whether or not their children or spouses could be
    affected resonated more with participants than their own personal
    risk. A few asked questions about whether or not the effects of the
    exposure could be "passed down." Another said, "If we were affected,
    that means someone in our family could be affected. How are
    offspring affected?" One person was worried that the exposure could
    have caused "a flaw in the \[genetic\] system that will keep getting
    passed down." Another participant, still misunderstanding the time
    period of exposure, said she was glad her children don't drink milk.

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-   A couple of participants said they would worry more about getting
    other types of cancers from the tests as opposed to developing
    thyroid problems. One participant asked, "Why does all this focus on
    the thyroid?" Another participant said he thought skin and bone
    cancer might be more likely problems based on what happened to the
    people who were bombed in Japan.

> [Actions Needed]{.underline}

-   Throughout the discussions, participants raised more questions than
    personal concerns about the tests. Questions that have not already
    been mentioned include:

> \-- Were all the tests underground?
>
> \-- How long does the I-131 fallout last? What is the half-life?
>
> \-- Can radiation sink into the ground? If so, can it rise back above
> the surface of the ground?
>
> \-- Was the information on the fact sheet compiled during the time of
> the testing or now?
>
> \-- Weren't the tests conducted in the desert so they wouldn't harm
> any people, plants or animals?

-   The majority of participants agreed that a public information
    campaign would be appropriate. One participant said, "The more
    people know, the better." However, a couple individuals in the
    groups noted that it would be important to conduct the campaign
    carefully so people don't panic needlessly.

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-   The majority of participants were not supportive of the IOM
    recommendation against screening. Most thought people should have
    the option to decide whether or not they needed to be screened. As
    one participant put it, "If they think it is relevant for them and
    they want to have it done, this should override the recommendation."

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-   Several participants requested more information about how to get
    tested for thyroid disease, including where to go and what the test
    involves. One respondent suggested providing information about how
    to check one's own thyroid gland for lumps or problems.

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-   A couple of participants were concerned that mandatory screening
    might cause a panic. This prompted one participant to suggest a
    campaign to inform doctors, so doctors could then decide whether or
    not a patient needed screening. A few others agreed with this
    recommendation.

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-   A few participants focused on compensation issues related to
    screening. One thought the government needed to pay for the
    screening, particularly for people with no insurance, since it was
    the government that caused the problem. Another participant
    questioned the motive behind the IOM recommendation, saying
    insurance companies and medical doctors were probably trying to get
    out of paying for the screening. One participant said those who were
    hurt should get "a big check" from the government and then laughed.

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-   A few participants thought that additional research was needed to
    develop a less-invasive screening test for thyroid cancer so more
    people can get screened without being harmed. Several also wanted
    more conclusive evidence showing that I-131 does cause health
    problems.

> [Educational Effort: Who Should Conduct It?]{.underline}

-   Participants had few suggestions about who should conduct an
    educational effort. When probed, a few said the federal government
    should head the effort since it was responsible for the exposure;
    several specifically said the Public Health Service and Centers for
    Disease Control and Prevention. In addition, a few participants
    indicated that their local governments should be responsible.
    Another participant said that "public health organizations that do
    things like vaccines" would be appropriate. Other organizations
    mentioned were Blue Cross, EPA, and the American Cancer Society.

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-   A few participants thought that people would be best educated by
    their own personal doctor. One participant suggested using an
    article in a medical society journal to educate physicians.

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-   When asked if the federal government needed to stay out of the
    effort, only a few participants commented. One said yes because
    "they lied once and they'll do it again." Another participant
    thought it was okay for the government to conduct the effort
    "because the people in government today are not the same people as
    40 years ago." Some participants felt that local government would be
    better, explaining that local government is more personal and less
    likely to withhold information.

> [Ethical Considerations]{.underline}:

-   Ethical issues related to the Cold War were brought up at two
    different points during the focus groups \-- at the very beginning
    when participants were asked for their concerns about consequences
    from the Nevada tests and then again after reading the article. A
    few participants said testing needed to be conducted for the U.S. to
    maintain the "balance of power."

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```
-   Only a couple of individuals commented when asked why it was or why
    it was not important to educate the public about what happened. One
    participant said it was important because people were "exposed
    without their knowledge." Another participant was unsure whether an
    educational effort was justified because "there was no real thyroid
    cancer outbreak."

> **C. Primary Care Physicians**
>
> [Awareness, Knowledge & Concern **Before** Reading Article and Fact
> Sheet]{.underline}

-   In general, physicians had vague memories but little actual
    knowledge about nuclear weapons tests conducted in the United
    States. A couple of participants said they had heard something about
    the issue in the last few years, but could not provide specifics.
    One participant said he remembered hearing that the government
    admitted to exposing people to radiation from some tests that were
    conducted in the 1950s and 1960s. Another said the government also
    admitted that workers at a test site in the 1950s were exposed to
    radiation. In addition, one participant recalled that soldiers were
    affected by tests conducted "when the atomic bombs were developed."
    Another physician recounted his father warning him as a child to
    refrain from eating snow, though he did not understand why. Only one
    participant in Vermont knew specific details about the Nevada
    testing, recalling that fallout resulted from tests conducted around
    1946-1955, that one type of fallout was strontium 90, and that
    weather patterns carried fallout across the US.

```{=html}
<!-- -->
```
-   Participants mentioned the western United States, Nevada, Utah and
    New Mexico when asked about nuclear testing locations.

```{=html}
<!-- -->
```
-   Most participants could provide no details about specific types of
    radiation emitted from the tests or about specific health or
    non-health related consequences.

```{=html}
<!-- -->
```
-   Participants could not recall where they received information about
    the Nevada nuclear tests. One participant thought there might have
    been a program about the issue on the Discovery Channel at one time.
    Another recalled seeing a person on television who recounted
    watching atomic bomb tests and suffering health effects afterward.

```{=html}
<!-- -->
```
-   Participants expressed little concern about their patients having
    negative health consequences as a result of the Nevada Test Site
    exposures. One participant said, "I have no day-to-day concerns. It
    was many years ago." Another participant thought that any serious
    consequences "would have shown up by now."

```{=html}
<!-- -->
```
-   Only a few participants recalled having any patients ask them about
    negative health effects from exposure to nuclear fallout. One
    physician said that only a few of his patients have expressed
    concern, and he told them how to "watch for lumps on their thyroid
    and other symptoms." Another participant said he had one patient
    with leukemia ask him if it might be related to the tests, but he
    couldn't give the patient an answer. Another mentioned a patient
    with a brain tumor who once asked about the possible connection to
    radiation fallout. Other participants said their patients are
    concerned about and ask questions about cancer, but they don't tend
    to relate it to the environment.

```{=html}
<!-- -->
```
-   Participants offered some explanations for why their patients are
    not concerned about radiation from the Nevada Test Site. One
    participant said patients are more concerned about negative health
    effects from nuclear power plants or disposal sites. A couple other
    participants said cellular telephones have recently become a big
    issue. Another physician noted that a majority of the population of
    Omaha, Nebraska, moved there from someplace else, thereby diluting
    the level of concern. Another said, "The testing was so long ago
    that people have forgotten about it; that's what the government
    wants."

> [Awareness, Knowledge & Concern **After** Reading Article and Fact
> Sheet]{.underline}

-   When asked about their initial reaction to the news article and fact
    sheet, participants responded with questions such as:

-   How did they determine radiation exposure for various areas of the
    country?

-   How was the data on dosage collected?

-   How can there be areas in the Central US where there was no exposure
    in between areas in the West and East where there was high exposure?

-   Do thyroid cancer rates map out similar to the radiation dosages
    displayed on the fact sheet?

-   What type of thyroid cancer might result from exposure to I-131?

-   Is there any scientific evidence that shows a direct link between
    I-131 exposure and thyroid diseases of any kind?

-   What's happening in Canada?

```{=html}
<!-- -->
```
-   Physicians repeatedly expressed a desire for sound scientific data
    about radiation dosage and links to negative health effects. Some
    even questioned the validity of the data that currently exists. One
    participant said he remembered a talk given by a lecturer at the
    National Cancer Institute who said the NCI exposure data was
    inaccurate and excluded some people who had higher-exposure because
    they drank milk from cattle. Another participant said she assumed
    any exposure information provided by the government would be wrong.

```{=html}
<!-- -->
```
-   The majority of participants said they would only be concerned for
    their patients if they received appropriate risk information
    indicating that there is a substantial increase in thyroid cancer.
    One participant said physicians would need to know if there was some
    type of evidence pointing to a "10% to 15% increase in thyroid
    cancer." Another asked, "Is this a hypothetical or a *true* risk?"

```{=html}
<!-- -->
```
-   The majority of participants agreed that they would not change the
    way they practice medicine based on the information they had just
    received and the ensuing discussion. Reasons for not changing their
    practice were as follows:

-   Thyroid cancer is rare (particularly in Nebraska and Vermont). One
    participant said she has only seen one case of thyroid cancer in
    twelve years.

-   Thyroid cancer is very survivable.

-   Most patients have other, more pressing health concerns such as
    breast cancer.

-   People are already "dying off from something else" by the time they
    get thyroid cancer.

-   The issue of I-131 has "fallen off the radar screen."

-   There is not enough scientific evidence to warrant a high degree of
    concern.

-   They do not want to unnecessarily alarm their patients with
    information that, to date is scientifically unfounded.

-   They already routinely check for cancerous and non-cancerous thyroid
    problems during regular physical exams.

> [Actions Needed]{.underline}

-   When asked what should be done to address I-131 exposure from the
    Nevada bomb testing, participants mentioned that the environment
    (air, water, and soil) should be tested and that nuclear testing
    should be permanently banned.

```{=html}
<!-- -->
```
-   Most participants thought an educational campaign targeting the
    public would be unnecessary and would only serve to cause undue
    public alarm. One participant said, "Too many things have been done
    in medicine before all the facts are in; we often put education
    before science." Others agreed that nothing should be done until a
    meaningful increase in actual risk is demonstrated. A couple of
    participants said a public education campaign would cause "a mess."
    Another stated that physicians are sometimes pressured by media
    coverage to do things just to put their patients' concerns to rest.

```{=html}
<!-- -->
```
-   Nearly all participants agreed that a medical education campaign
    targeted at physicians would not be beneficial because, again, the
    information would not change the way they practice medicine. One
    participant thought some very basic information provided to
    physicians in higher-exposure areas may be useful just to put them
    "on alert."

```{=html}
<!-- -->
```
-   All participants agreed with the IOM recommendation that screening
    at this time is unwarranted. All agreed that thyroid cancer is rare,
    very survivable and that false positives would result in more harm
    than good being done to patients. A couple of participants said they
    were also uncertain about the real benefits associated with early
    detection of thyroid cancer. One participant stated that checking
    everyone's thyroid would be a "logistical public health nightmare."

> [Educational Effort: Who Should Conduct It?]{.underline}

-   If any educational effort were to be conducted, some participants
    thought the National Cancer Institute or the National Institute of
    Health would be the most appropriate sponsor because they are
    science-oriented. Others mentioned medical societies like the
    American Medical Association or their professional membership
    organizations such as the American Association of Family Physicians
    (AAFP).

```{=html}
<!-- -->
```
-   A couple of participants expressed concerns about sponsorship by
    advocacy organizations because they are not research-based and could
    be motivated by self-interests. Some participants said the American
    Cancer Society should not be involved for this reason. When the
    Vermont participants were asked about the Society of Physicians for
    Responsible Medicine, all of them laughed and immediately
    discredited the group as being too politically extreme.

> [Ethical Considerations]{.underline}

-   Ethical issues regarding why the nuclear tests were conducted and
    about individuals' right to know triggered little interest among
    physician participants.

```{=html}
<!-- -->
```
-   Most physicians thought it would be unethical to launch any type of
    educational effort before there is scientific data to support the
    necessity of such an effort. One participant said, "It would not be
    a public service announcement, it would be a public disservice
    announcement."

> **I-5 ATTACHMENTS**
>
> **I-5-A. Participant Screening Questionnaires**
>
> **I-5-B. Moderator's Topic Guides**

**ATTACHMENT I-5-A**

**OMB# 0925-0046**

**Exp. Date 8/31/00**

**Screener for Health Focus Groups with Public**

**Name**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**Street Address**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**City**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ **Zip
Code**: \_\_\_\_\_\_\_\_\_\_\_\_\_\_ \_\_\_\_\_\_\_\_\_\_

**Home Phone**: \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ **Work
Phone**: \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

+---+-------------+------------------+-------------+------+----------+
|   | **City**    | **Group**        | *           | **Da | **Time** |
|   |             |                  | *Facility** | te** |          |
+---+-------------+------------------+-------------+------+----------+
| - | Ph          | Lower risk       | Focus       | Dec. | 6:00 PM  |
|   | iladelphia, |                  | Pointe      | 7    |          |
|   | PA          |                  |             |      |          |
|   |             |                  |             |      |          |
+---+-------------+------------------+-------------+------+----------+
| - | Ph          | Lower risk       | Focus       | Dec. | 8:00 PM  |
|   | iladelphia, |                  | Pointe      | 7    |          |
|   | PA          |                  |             |      |          |
|   |             |                  |             |      |          |
+---+-------------+------------------+-------------+------+----------+
|   |             |                  |             |      |          |
+---+-------------+------------------+-------------+------+----------+
| - | Omaha, NE   | Higher risk      | Midwest     | Dec. | 5:30 PM  |
|   |             |                  | Survey      | 13   |          |
|   |             |                  |             |      |          |
|   |             |                  |             |      |          |
+---+-------------+------------------+-------------+------+----------+
| - | Burlington, | Higher risk      | Action      | Dec. | 5:30 PM  |
|   | VT          |                  | Research    | 14   |          |
|   |             |                  |             |      |          |
|   |             |                  |             |      |          |
+---+-------------+------------------+-------------+------+----------+

##### INTRODUCTION {#introduction .unnumbered}

Hello, my name is \_\_\_\_\_\_\_\_\_\_\_, and I'm calling on behalf of a
national, non-profit organization concerned about the health and
well-being of Americans. We're talking to people to learn their opinions
about some important environmental and health issues.\
I want to assure you that we're not selling anything and that your
responses will be kept confidential.\
\
May I speak to an adult in the household? (ONCE SPEAKING TO ADULT,
REPEAT INTRODUCTION IF NECESSARY AND ASK:) Would you be willing to
answer a few questions?

-   Yes (CONTINUE)

-   No (THANK AND TERMINATE)

1.  What is your exact age? (RECORD EXACT RESPONSE AND CODE IN
    APPROPRIATE AGE SUBGROUP.)

> **Age**: \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

-   Younger than 39 (THANK AND TERMINATE)

-   39-47 (RECRUIT 4)

-   48-56 (RECRUIT 4)

-   57-64 (RECRUIT 4)

-   65 or older (THANK AND TERMINATE)

2.  I'm going to read you a list of statements. For each one, please
    tell me whether you agree, neither agree nor disagree, or disagree
    with that statement. (READ.)

+---------------------+-----------+-----------+-----------+-----------+
|                     | **Agree** | **Neither | **D       | **Don't   |
|                     |           | Agree nor | isagree** | Know/\    |
|                     |           | D         |           | Refused** |
|                     |           | isagree** |           |           |
+---------------------+-----------+-----------+-----------+-----------+
| To protect the      | 1         | 2\        | 3\        | 9         |
| environment, people |           | (         | (         |           |
| need to make big    | (         | CONTINUE) | CONTINUE) | (         |
| changes in the way  | CONTINUE) |           |           | CONTINUE) |
| they live.          |           |           |           |           |
+---------------------+-----------+-----------+-----------+-----------+
| I am concerned      | 1         | 2\        | 3\        | 9         |
| about the           |           | (         | (         |           |
| environment because | (         | CONTINUE) | CONTINUE) | (         |
| of the potential    | CONTINUE) |           |           | CONTINUE) |
| harm to myself and  |           |           |           |           |
| my family.          |           |           |           |           |
+---------------------+-----------+-----------+-----------+-----------+

3.  Different areas of the country are more or less concerned about
    environmental issues. Thus, where we have lived can affect our
    opinions about the environment.

```{=html}
<!-- -->
```
a.  I'm going to read you a list of states, and please tell me if you
    lived in any of these states between the time you were born and
    age 15. (READ STATES IN COLUMN "a" AND CHECK ANY STATES WHERE
    RESPONDENT LIVED BETWEEN THE AGES OF 0-15. MULTIPLE RESPONSES
    ACCEPTED.\
    \
    IF NO CHECKS ARE MADE IN COLUMN "a," CLASSIFY AS "[LOWER
    RISK]{.underline}" AND SKIP TO Q3.\
    \
    IF ONE ORE MORE STATES ARE CHECKED, ASK Q2b FOR EACH STATE
    MENTIONED.)

b.  Did you live in \[STATE\] for at least 5 years? (USE COLUMN "b" TO
    CHECK ANY STATE(S) WHERE RESPONDENT LIVED AT LEAST 5 YEARS.\
    \
    CLASSIFY AS "[HIGHER RISK]{.underline}" ANY RESPONDENT WHO HAS LIVED
    IN AT LEAST ONE OF THE LISTED STATES FOR AT LEAST 5 YEARS BETWEEN
    THE AGES OF 0-15.)

+-----------------------+------------------+--------------------------+
|                       | **a. Lived in    | **b. At least 5 years\   |
|                       | state from age   | (ASK HIGHER RISK ONLY)** |
|                       | 0-15**           |                          |
+-----------------------+------------------+--------------------------+
| (1) Arkansas          | -                | -                        |
+-----------------------+------------------+--------------------------+
| (2) Colorado          | -                | -                        |
+-----------------------+------------------+--------------------------+
| (3) Idaho             | -                | -                        |
+-----------------------+------------------+--------------------------+
| (4) Illinois          | -                | -                        |
+-----------------------+------------------+--------------------------+
| (5) Iowa              | -                | -                        |
+-----------------------+------------------+--------------------------+
| (6) Kansas            | -                | -                        |
+-----------------------+------------------+--------------------------+
| (7) Minnesota         | -                | -                        |
+-----------------------+------------------+--------------------------+
| (8) Missouri          | -                | -                        |
+-----------------------+------------------+--------------------------+
| (9) Montana           | -                | -                        |
+-----------------------+------------------+--------------------------+
| (10) Nebraska         | -                | -                        |
+-----------------------+------------------+--------------------------+
| (11) Nevada           | -                | -                        |
+-----------------------+------------------+--------------------------+
| (12) North Dakota     | -                | -                        |
+-----------------------+------------------+--------------------------+
| (13) Oklahoma         | -                | -                        |
+-----------------------+------------------+--------------------------+
| (14) South Dakota     | -                | -                        |
+-----------------------+------------------+--------------------------+
| (15) Utah             | -                | -                        |
+-----------------------+------------------+--------------------------+
| (16) Vermont          | -                | -                        |
+-----------------------+------------------+--------------------------+
| (17) Wisconsin        | -                | -                        |
+-----------------------+------------------+--------------------------+
| (18) Wyoming          | -                | -                        |
+-----------------------+------------------+--------------------------+

4.  Currently there are many issues about the environment under public
    debate, and different people are more or less familiar with them.
    I'm going to read you a list of specific environmental issues. For
    each one, please tell me whether you are "familiar," "neither
    familiar nor unfamiliar," or "not at all familiar" with that issue.

+--------------------+------------+-----------+-----------+-----------+
|                    | **         | Neither   | **Not at  | **Don't   |
|                    | Familiar** | Familiar  | All       | Know/\    |
|                    |            | Nor       | F         | Refused** |
|                    |            | U         | amiliar** |           |
|                    |            | nfamiliar |           |           |
+--------------------+------------+-----------+-----------+-----------+
| Liquid waste from  | 1          | 2\        | 3\        | 9         |
| chemical plants.   |            | (         | (         |           |
|                    | (CONTINUE) | CONTINUE) | CONTINUE) | (         |
|                    |            |           |           | CONTINUE) |
+--------------------+------------+-----------+-----------+-----------+
| Residual           | 1          | 2\        | 3\        | 9         |
| pesticides in the  |            | (         | (         |           |
| water supply.      | (CONTINUE) | CONTINUE) | CONTINUE) | (         |
|                    |            |           |           | CONTINUE) |
+--------------------+------------+-----------+-----------+-----------+
| Radioactive        | 1          | 2\        | 3         | 9         |
| fallout from       |            | (         |           |           |
| nuclear testing.   | (THANK AND | CONTINUE) | (         | (         |
|                    | TERMINATE) |           | CONTINUE) | CONTINUE) |
+--------------------+------------+-----------+-----------+-----------+
| Toxic air          | 1          | 2\        | 3\        | 9         |
| emissions from     |            | (         | (         |           |
| coal plants used   | (CONTINUE) | CONTINUE) | CONTINUE) | (         |
| to generate        |            |           |           | CONTINUE) |
| electricity.       |            |           |           |           |
+--------------------+------------+-----------+-----------+-----------+

5.  Since this study is also about health, I'm going to ask you some
    health related questions. Have you have ever been diagnosed with any
    of the following diseases ... (READ. DO **NOT** RECRUIT PARTICIPANTS
    WHO HAVE HAD THYROID DISEASE OR CANCER.)

-   Respiratory disease (CONTINUE)

-   Heart disease (CONTINUE)

-   Thyroid disease (THANK AND TERMINATE)

-   Cancer of any kind (THANK AND TERMINATE)

6.  Have any of your immediate family members, that is, your parents,
    brothers or sisters, partner, or children, ever been diagnosed with
    any of the following diseases ... (READ. DO **NOT** RECRUIT
    PARTICIPANTS WHO HAVE HAD IMMEDIATE FAMILY MEMBER DIAGNOSED WITH
    THYROID DISEASE.)

-   Respiratory disease (CONTINUE)

-   Heart disease (CONTINUE)

-   Thyroid disease of any kind, including thyroid cancer (THANK AND
    TERMINATE)

-   Cancer of any other kind (CONTINUE)

7.  I have a few more questions to ask for classification purposes.
    Which of the following best describes your race? (READ. RECRUIT 8
    WHITE AND 4 NON-WHITE. NEBRASKA FACILITY MUST RECRUIT AT LEAST 2
    AMERICAN INDIAN/ALASKA NATIVE.)

-   White

-   Black or African American

-   Hispanic or Latino

-   Asian

-   Native Hawaiian/Other Pacific Islander

-   American Indian /Alaska Native

8.  Which of the following best describes your highest level of
    education? (READ.)

-   Less than high school degree (THANK AND TERMINATE)

-   High school degree (RECRUIT AT LEAST 3)

-   Some college/technical school/associates degree (RECRUIT AT LEAST 3)

-   4-year college degree (RECRUIT NO MORE THAN 3)

-   Some graduate school or more (THANK AND TERMINATE)

9.  (NOTE GENDER:)

-   Male (RECRUIT 6)

-   Female (RECRUIT 6)

10. Have you ever been employed in any of the following settings?

  --------------------------- -------------- ------------- ----------------
                              **Yes**        No            **Don't
                                                           Know/Refused**

  Medical or health setting   (THANK AND     (CONTINUE)    (THANK AND
                              TERMINATE)                   TERMINATE)

  Advertising or market       (THANK AND     (CONTINUE)    (THANK AND
  research setting            TERMINATE)                   TERMINATE)
  --------------------------- -------------- ------------- ----------------

11. Have you ever participated in a focus group discussion or been paid
    to be part of a discussion group?

-   Yes (CONTINUE)

-   No (SKIP TO INVITATION)

12. How recently did you participate in the focus group?

-   6 months ago or less (THANK AND TERMINATE)

-   More than 6 months ago (CONTINUE)

13. What did you talk about during the groups? (RECORD VERBATIM. DO NOT
    RECRUIT IF TOPICS WERE ABOUT THE ENVIRONMENT, ATOMIC BOMBS, NUCLEAR
    RADIATION, THYROID DISEASE, OR CANCER.)

\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\
\
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\
\
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

##### INVITATION {#invitation .unnumbered}

Thank you for answering our questions. We'd like to invite you to take
part in a focus group discussion of 8-10 people. We're talking to adults
across the U.S. so that we can better plan for a national program
focusing on the environment and the health of Americans. Your
participation is very important to us. The focus group will take place
\[FACILITY, DATE, TIME\] and will last about 2 hours. Participants will
be paid \$\_\_\_\_\_ in cash for their time to take part. We'll also
serve refreshments. Will you take part?

-   Yes (CONTINUE)

-   No (THANK AND TERMINATE)

Thanks for accepting our invitation. For contact purposes, may I get
your name, address, and daytime and evening phone numbers? (RECORD
INFORMATION ON FIRST PAGE)

We will send you a packet with a confirmation letter three to five days
before the focus group is held. It will include directions to the
location where the discussion will take place. It is very important that
you arrive on time. If you need glasses for reading, please bring them
to the discussion. If you have any questions or find out that you cannot
attend the focus group, please call \_\_\_\_\_\_\_\_\_\_\_ at
\_\_\_\_\_\_\_\_\_\_ so that we can find someone to take your place.
Thank you for agreeing to take part in our study. We look forward to
meeting you. Goodbye.

(NOTE TO RECRUITER: If respondents have any questions or concerns about
the focus group topic, please contact Memi Miscally at Porter Novelli at
202-973-5845. Do NOT give her name to respondents.)

**Recruited by**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ **Date**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**Confirmed by**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ **Date**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

OMB# 0925-0046

Exp. Date 8/31/00

Screener for Health Focus Groups with Physicians

##### Name: \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ {#name-___________________________________________________________________ .unnumbered}

**Street Address:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\
**

**City: \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
Zip Code: \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\
**

**Home Phone: \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ Work Phone:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_**

+---+----------------+---------------+-------------+------+----------+
|   | **City**       | **Group**     | *           | **Da | **Time** |
|   |                |               | *Facility** | te** |          |
+---+----------------+---------------+-------------+------+----------+
| - | Omaha, NE      | Physicians    | Midwest     | Dec. | 7:30 PM  |
|   |                |               | Survey      | 13   |          |
|   |                |               |             |      |          |
|   |                |               |             |      |          |
+---+----------------+---------------+-------------+------+----------+
| - | Burlington, VT | Physicians    | Action      | Dec. | 7:30 PM  |
|   |                |               | Research    | 14   |          |
|   |                |               |             |      |          |
|   |                |               |             |      |          |
+---+----------------+---------------+-------------+------+----------+

##### INTRODUCTION {#introduction-1 .unnumbered}

Hello, my name is \_\_\_\_\_\_\_\_\_\_\_, and I'm calling on behalf of a
national, non-profit organization concerned about the health and
well-being of Americans. We're talking to physicians to learn their
opinions about some important health issues. I want to assure you that
we're not selling anything and that your responses will be kept
confidential. May I speak to a physician? (ONCE SPEAKING TO PHYSICIAN,
REPEAT INTRODUCTION IF NECESSARY AND ASK:) Would you be willing to
answer a few questions?

-   Yes (CONTINUE)

-   No (THANK AND TERMINATE)

1.  Which of the following best describes the kind of medicine you
    practice? (READ.)

```{=html}
<!-- -->
```
a.  General practice (CONTINUE)

b.  Family practice (CONTINUE)

c.  General internist (CONTINUE)

d.  Other (THANK AND TERMINATE)

```{=html}
<!-- -->
```
2.  Are you a practicing physician---that is, do you see patients on a
    regular basis?

> a\. Yes (CONTINUE)
>
> b\. No (THANK AND TERMINATE)

3.  Which of the following best describes how old the majority of your
    patients are? Are they ... (READ.)

```{=html}
<!-- -->
```
a.  Younger than 18 (THANK AND TERMINATE)

b.  18-64 (CONTINUE)

c.  65 or older (THANK AND TERMINATE)

```{=html}
<!-- -->
```
4.  Do you see approximately equal numbers of males and females?

```{=html}
<!-- -->
```
a.  Yes (CONTINUE)

b.  No (THANK AND TERMINATE)

```{=html}
<!-- -->
```
5.  How many years have you been practicing medicine?

> a\. Less than 5 years (THANK AND TERMINATE)
>
> b\. 5 years or more (CONTINUE)

6.  How long have you been practicing in the state of Nebraska/Vermont?

> a\. Less than 3 years (THANK AND TERMINATE)
>
> b\. 3 years or more (CONTINUE)

7.  Are you employed full-time by a managed care company such as Kaiser
    Permanente or Aetna?

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a.  Yes (RECRUIT NO MORE THAN 2)

b.  No (CONTINUE)

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```
8.  Have you ever been employed in an advertising or market research
    setting?

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```
a.  Yes (THANK AND TERMINATE)

b.  No (CONTINUE)

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```
9.  Have you ever participated in a focus group discussion or been paid
    to be part of a discussion group?

-   Yes (CONTINUE)

-   No (SKIP TO INVITATION)

10. How recently did you participate in the focus group?

-   6 months ago or less (THANK AND TERMINATE)

-   More than 6 months ago (CONTINUE)

11. What did you talk about during the groups? (RECORD VERBATIM. DO NOT
    RECRUIT IF TOPICS WERE ABOUT THE ENVIRONMENT, ATOMIC BOMBS, NUCLEAR
    RADIATION, THYROID DISEASE, OR CANCER.)

\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\
\
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\
\
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

##### INVITATION {#invitation-1 .unnumbered}

Thank you for answering our questions. We'd like to invite you to take
part in a focus group discussion of 8-10 people. We're talking to
physicians across the U.S. so that we can better plan for a national
program focusing on the health of Americans. Your participation is very
important to us. The focus group will take place \[FACILITY, DATE,
TIME\] and will last about 2 hours. Participants will be paid
\$\_\_\_\_\_ in cash for their time to take part. We'll also serve
refreshments. Will you take part?

-   Yes (CONTINUE)

-   No (THANK AND TERMINATE)

Thanks for accepting our invitation. For contact purposes, may I get
your name, address, and daytime and evening phone numbers? (RECORD
INFORMATION ON FIRST PAGE)

We will send you a packet with a confirmation letter three to five days
before the focus group is held. It will include directions to the
location where the discussion will take place. It is very important that
you arrive on time. If you need glasses for reading, please bring them
to the discussion. If you have any questions or find out that you cannot
attend the focus group, please call \_\_\_\_\_\_\_\_\_\_\_ at
\_\_\_\_\_\_\_\_\_\_ so that we can find someone to take your place.
Thank you for agreeing to take part in our study. We look forward to
meeting you. Goodbye.

(NOTE TO RECRUITER: If respondents have any questions or concerns about
the focus group topic, please contact Memi Miscally at Porter Novelli at
202-973-5845. Do NOT give her name to respondents.)

**Recruited by**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ **Date**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**Confirmed by**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ **Date**:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**ATTACHMENT I-5-B**

OMB# 0925-0046

Exp. Date 8/31/00

**[Moderator's Guide for I-131 Focus Groups with the General
Public]{.underline}**

**I. EXPLANATION AND INTRODUCTIONS** (10 minutes)

1.  **Thanks** for coming today. Your participation is very important to
    us; your insights will help us develop a national public health
    program.

2.  My name is \_\_\_\_\_\_ and I work for \_\_\_\_\_\_, an independent
    research company. I do not work with the sponsor of these groups, so
    please feel that you can give me your **honest**
    opinions---**positive and negative**.

3.  What we're doing today is called a focus group. You may have guessed
    that all of you **live in the Philadelphia/Omaha/Burlington area**,
    and for the next 2 hours, we're going to talk about the
    **environment and your** **health**.

4.  I'm interested in all of your ideas, comments, and suggestions.
    There are **no right or wrong answers**. It's important that I hear
    what everyone thinks, so please speak up, especially if your view is
    different from something someone else says.

5.  We'll **audio-tape** and **video-tape** this discussion. In
    addition, program planners sitting behind this mirror will
    **observe**. We're taking these steps because everything you say is
    important to us, and we want to make sure we don't miss any
    comments.

6.  Please **talk one at a time** and in a voice at least as **loud** as
    mine so that the recording equipment can pick up everything that is
    said.

7.  Later, we'll go through all of your comments and use them to write a
    report. Remember that all of your comments are **confidential**.
    Your name will not be used in the report.

8.  If you need to use the bathroom, please go **one at a time**.

9.  Please turn off any **beepers, pagers, or cell phones** that you may
    have.

10. Before we begin the discussion, please **introduce** yourself.
    Please tell us your:

-   First name

-   Number of years you've been living in the
    Philadelphia/Omaha/Burlington area

**II. GENERAL AWARENESS, KNOWLEDGE, AND CONCERN** (25 minutes)

1.  What are some of the environmental issues that you've heard about,
    if any at all? Where does nuclear radiation fit into the list of
    issues? (SPEND ONLY A MINUTE AND THEN MOVE ON)

2.  What words, images, or feelings come to mind when I say the word
    nuclear radiation?

3.  What, if anything, have you heard about nuclear weapons tests
    conducted in the United States? (TRY TO OBTAIN PLACES AND DATES OF
    ATOMIC BOMB TESTING AND TYPES OF NUCLEAR RADIATION RELEASED)

About 100 atomic bomb tests were conducted in the state of Nevada during
the 1950s and 1960s. These tests released different types of radioactive
material into the atmosphere. The rest of this discussion will pertain
to these tests and the nuclear radiation fallout.

4.  Have you heard anything about these tests? IF YES: What have you
    heard about these tests?

PROBE: Types of radiation released?

IF AWARE OF MORE THAN ONE MATERIAL: Are you concerned about some of the
radioactive substances more than others? What makes you more concerned?

5.  What, if any, questions do you have about these tests and the
    nuclear radiation released?

PROBE: How about health related consequences?

How about any non-health related consequences?

6.  What, if any, concerns do you have about these tests and the nuclear
    radiation released?

PROBE: How about health-related consequences?

How about any non-health-related consequences?

7.  From what sources have you gotten any information you might have? IF
    MEDIA: From what sources did the media get their information? For
    example, do you remember any specific individuals, experts or
    organizations that the media quoted or mentioned? (PROBE FOR
    AWARENESS OF NCI AND IOM REPORTS)

**III. REACTIONS AFTER SEEING ARTICLE** (30 minutes)

Now, I'm going to give you a newspaper article (or fact sheet) to read
about the Nevada nuclear bomb tests. Some of this information you may
already know. Please read all the information carefully as we will be
discussing this material in detail next.

1.  What are your initial reactions to this article and the additional
    information I've given you? (LEAVE OPEN DISCUSSION AROUND
    EMOTIONS/FEELINGS OR THE INFORMATION ITSELF)

2.  When might people living in the U.S. have been affected by I-131?
    During the 1950s and 1960s when the tests were conducted? Now, in
    the 1990s? In the future, when it's 2000 and beyond?

You may or may not have a thorough understanding of thyroid cancer. To
ensure that all of us have the information we need to get through
tonight's discussion, I'd like to give you some information about
thyroid cancer. (SHOW BOARD)

3.  Based on the information provided, who do you think is at risk for
    thyroid cancer from the Nevada tests? What are the major factors
    that make someone more at risk?

PROBE: Different geographical areas

> Age
>
> Milk consumption

4.  How concerned are you personally about your risk for developing
    thyroid cancer as a result of these tests and exposure to the
    fallout? What makes you particularly concerned?

5.  How concerned are you personally about your risk of developing any
    of the non-cancerous thyroid diseases I mentioned as a result of the
    Nevada tests? What makes you concerned?

6.  In comparison to other types of health risks like heart disease or
    stroke, how concerned are you about getting thyroid cancer? How
    about non-cancerous thyroid diseases?

7.  Is the information I provided you with confusing or clear? What
    would need to be done to make it easier to understand?

8\. Would you like more information to determine how important a health
issue the I-131 fallout from the Nevada tests is for you? Why or why
not? What information?

**IV. EDUCATIONAL CAMPAIGN** (40 minutes)

1\. What, if anything, do you think should be done about I-131 and any
potential health risks?

PROBE: Public Education

Screening

Compensation for Medical Expenses

2.  Who should be responsible? (IF GOVERNMENT: PROBE FOR LOCAL, STATE OR
    FEDERAL, IF FEDERAL PROBE FOR AGENCIES) What about these entities
    makes them responsible?

3\. What are your opinions about this recommendation?

Do you think there is a need for a public information campaign to
educate people about their possible exposure to I-131 and the potential
risks associated with that exposure?

4\. In your opinion, who needs to be informed about the possible risks
associated with the I-131 emitted from the nuclear tests? Should
everyone in the U.S. be the focus, or should information be targeted to
those who may have been more exposed? Why?

5.  IF GENERAL PUBLIC: What information do you think the general public
    needs to get? IF THOSE MORE EXPOSED: What information do you think
    people who were heavily exposed need to get?

```{=html}
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```
6.  What information do you think you personally need about the I-131
    emitted from the Nevada tests and its possible health effects?

7.  What do you think would be the most effective ways to get this
    information to people?

PROBE: Television/radio

Newspapers/magazines

Conferences/meetings

Interpersonal communication

Brochures

Internet

8.  What health care professionals, if any, do you think should be
    involved in reaching out to people? What about these people makes
    them important?

9.  If an educational effort is to be launched, some organization or
    organizations need to be responsible for implementing the effort.
    Are there any organizations or types of organizations that you
    particularly trust to implement these efforts? What about those
    organizations makes you trust them?

(PROBE: Government agencies, non-profit organizations or advocacy
groups?)

10. Are there any organizations or types of organizations that should
    NOT be involved in implementing these efforts? What makes them
    untrustworthy?

11. Do you think people will trust a public education campaign that is
    conducted by the federal government? Would it matter what specific
    federal agencies are involved? Why?

**V. ADDITIONAL CONSIDERATIONS** (10 minutes)

1.  In your opinion, what are the **main** reasons why the public should
    be informed about the Nevada Test Site, I-131 exposure, and any
    potential health problems?

IF NECESSARY, PROBE: Some people think the government has an obligation
to let people know about the exposure from the Nevada Test Site
primarily because some people could have been harmed by the fallout.
Other people think that regardless of the level of harm people
experienced, the government has an obligation to inform the public
because the public has a right to know about its government's actions.
Which of these best represents your views? Why?

2.  Based on everything you know now, what if anything, would justify
    the Nevada atomic bomb testing?

IF NECESSARY, PROBE: People were exposed to radioactive material while
nuclear weapons were being tested for the purpose of defending our
country. What do you think about this?

3.  Do you think the government would have intentionally exposed people
    to radioactive material or do you think the government probably
    didn't know about the negative health effects that may be associated
    with the exposures until after the tests were already conducted?

4.  What else do you think needs to be done to address the issue of
    I-131 fallout from the Nevada Test Site that we have not talked
    about?

5.  How do these ethical considerations impact your trust in the
    government as a whole and different government agencies?

6.  Is there anything else that you think needs to be done to address
    the issue of I-131 fallout from the Nevada Test Site that we have
    not talked about?

**VI. CLOSING** (5 minutes)

1.  CHECK WITH OBSERVERS FOR ADDITIONAL QUESTIONS.

2.  Those are all of the questions I have. Do you have any final
    comments?

3.  Thanks for your participation today. I have some bookmarks that can
    provide you with current information about what we've discussed this
    evening. Feel free to take one before you leave.

**OMB# 0925-0046**

**Exp. Date 8/31/00**

**[Moderator's Guide for I-131 Focus Groups with
Physicians]{.underline}**

**I. EXPLANATION AND INTRODUCTIONS** (10 minutes)

1.  **Thanks** for coming today. Your participation is very important to
    us; your insights will help us develop a national public health
    program.

2.  My name is \_\_\_\_\_\_ and I work for \_\_\_\_\_\_, an independent
    research company. I do not work with the sponsor of these groups, so
    please feel that you can give me your **honest** opinions --
    **positive and negative.**

3.  What we're doing today is called a focus group. You may have guessed
    that all of you are **primary care** **physicians**, and for the
    next 2 hours, we're going to talk about the **environment and the**
    **health of your patients**.

4.  I'm interested in all of your ideas, comments, and suggestions.
    There are **no right or wrong answers**. It's important that I hear
    what everyone thinks, so please speak up, especially if your view is
    different from something someone else says.

5.  We'll **audio-tape** and **video-tape** this discussion. In
    addition, program planners sitting behind this mirror will
    **observe**. We're taking these steps because everything you say is
    important to us, and we want to make sure we don't miss any
    comments.

6.  Please **talk one at a time** and in a voice at least as **loud** as
    mine so that the recording equipment can pick up everything that is
    said.

7.  Later, we'll go through all of your comments and use them to write a
    report. Remember that all of your comments are **confidential**.
    Your name will not be used in the report.

8.  If you need to use the bathroom, please go **one at a time**.

9.  Please turn off any **beepers, pagers, or cell phones** that you may
    have.

10. Before we begin the discussion, please **introduce** yourself.
    Please tell us your:

-   First name

-   Number of years you've been practicing in the Omaha/Burlington area

**II GENERAL AWARENESS, KNOWLEDGE, AND CONCERN** (25 minutes)

1.  What are some of the environmental issues that you've heard about,
    if any at all? Where does nuclear radiation fit into the list of
    issues? (SPEND ONLY A MINUTE AND THEN MOVE ON)

2.  What words, images, or feelings come to mind when I say the word
    nuclear radiation?

3.  What, if anything, have you heard about nuclear weapons tests
    conducted in the United States? (TRY TO OBTAIN PLACES AND DATES OF
    ATOMIC BOMB TESTING AND TYPES OF NUCLEAR RADIATION RELEASED)

About 100 atomic bomb tests were conducted in the state of Nevada during
the 1950s and 1960s. These tests released different types of radioactive
material into the atmosphere. The rest of this discussion will pertain
to these tests and the nuclear radiation fallout.

4.  What, if anything, have you heard about these Nevada bomb tests
    conducted during the 1950s and 1960s and the resulting nuclear
    radiation fallout?

PROBE: Types of radiation released?

> IF AWARE OF MORE THAN ONE MATERIAL: Are you concerned about some of
> the radioactive substances more than others? What makes you more
> concerned?

5.  What, if any, questions do you have about these tests and the
    nuclear radiation released?

6.  What, if any, concerns do you have about these tests and the nuclear
    radiation released?

> PROBE: Any concerns about health or non-health related consequences?

7.  Have you and your patients discussed the Nevada bomb tests and
    health problems resulting from the I-131 fallout radiation? If so,
    how often? What have you talked about? Who typically initiates the
    conversation---you or your patients?

8.  Relative to their other health concerns, how concerned are your
    patients about experiencing health problems as a result of being
    exposed to I-131?

9.  How concerned about I-131 health effects is your community in
    general?

10. From what sources have you gotten any information you might have? IF
    MEDIA: From what sources did the media get their information? For
    example, do you remember any specific individuals, experts or
    organizations that the media quoted or mentioned? (PROBE FOR
    AWARENESS OF NCI AND IOM REPORTS)

**III REACTIONS AFTER SEEING ARTICLE** (30 minutes)

Now, I'm going to give you a newspaper article and fact sheet to read
about the Nevada nuclear bomb tests. The article actually appeared in
newspapers across the country, perhaps even in your area. Some of this
information you may already know. Please read all the information
carefully as we will be discussing this material in detail next. (SHOW
ARTICLE)

1.  What are your initial reactions to this article and the additional
    information I've given you? (LEAVE OPEN DISCUSSION AROUND
    EMOTIONS/FEELINGS OR THE INFORMATION ITSELF)

2.  When might people living in the U.S. have been affected by I-131?
    During the 1950s and 1960s when the tests were conducted? Now, in
    the 1990s? In the future, when it's 200 and beyond?

You may or may not have a thorough understanding of thyroid cancer. To
ensure that all of us have the information we need to get through
tonight's discussion, I'd like to give you some information about
thyroid cancer. (SHOW BOARD)

3.  Who do you perceive to be most at-risk for thyroid cancer based upon
    the risk factors presented in the article? Which factors are most
    central?

PROBE: Different geographical areas

> Age\
> Milk consumption

4.  Given the identified risk factors, how concerned are you that any of
    your current patients may be at risk of developing thyroid cancer?

5.  Do you believe these concerns about non-cancerous thyroid conditions
    are warranted by available information on I-131 and its effects on
    human health? Or are these concerns needlessly raised?

6.  Additional research into the non-cancerous thyroid conditions due to
    I-131 exposure is being conducted. How worthwhile do you think this
    effort is?

7.  How concerned are you about your patients' risk of developing any of
    the non-cancerous thyroid disease I mentioned as a result of the
    Nevada tests? What makes you concerned?

8.  In comparison to other types of health risks, how concerned are you
    about your patients' risk for thyroid cancer as a result of I-131
    exposure? Non-cancerous thyroid diseases? (DETERMINE WHETHER
    PARTICIPANTS ARE MORE CONCERNED ABOUT THYROID CANCER OR
    NON-CANCEROUS THYROID DISEASES)

9.  What other information would you need to make a good determination
    of whether you have patients that are at heightened risk for I-131
    related problems?

**IV. EDUCATION CAMPAIGN** (45 minutes)

1.  What, if anything, do you think should be done to educate the public
    about I-131 and potential health risks?

PROBE: Public education

Screening

> Compensation for medical expenses (RESERVE ANY DISCUSSION AROUND
> ADDITIONAL TYPES OF COMPENSATION FOR SECTION V)

2.  Who should be responsible for implementing these efforts? (IF
    GOVERNMENT: PROBE FOR LOCAL, STATE OR FEDERAL, IF FEDERAL PROBE FOR
    AGENCIES) What about these entities makes them responsible?

In 1999, the Institute of Medicine (IOM), a panel of experts from the
National Academy of Scientists congressionally mandated to advise the
federal government on medical issues, released medical screening
recommendations for people who may have been exposed to I-131 released
from the Nevada Tests. The panel concluded that the available science
does NOT warrant medical screening tests within the general population
or within any subgroups of the population.

The reasoning behind this recommendation is that very few people get
thyroid and those that do are very likely to be cured. In addition, the
current method of thyroid cancer screening can produce false positives,
meaning that people may be inaccurately diagnosed with thyroid cancer
and consequently subjected to unnecessary fear, medication and surgery.

For these reasons, the IOM felt that the evidence suggests that more
harm than good to the public would be done with screening.

3.  What are your opinions about this recommendation? How important is
    it to educate the public about I-131 and the potential health risks?

4.  In your opinion, who needs to be informed about the possible risks
    associated with the I-131 emitted from the nuclear tests? Should
    everyone in the U.S. be the focus, or should information be targeted
    to those who may have been more exposed? Why?

5.  IF GENERAL PUBLIC: What information do you think the general public
    needs to get?

> IF THOSE MORE EXPOSED: What information do you think people who were
> heavily exposed need to get?

6.  What role, if any, should physicians play in a campaign to educate
    the public about I-131 health implications?

7.  Based on what you know now, is it important for you to inform your
    patients? Why or why not?

8.  What barriers might you encounter? What support might you need?

PROBE: Time

Money

Tips on how to talk to patients

Materials (What types?)

Further information

9.  What other types of health care professionals should be involved in
    an educational effort?

10. If an educational effort is to be launched, some organization or
    organizations need to be responsible for implementing the effort.
    What organizations or types of organizations would you particularly
    trust to implement these efforts? What about those organizations
    makes you trust them?

PROBE: Government agencies

Non-profit organizations

Advocacy groups

Medical associations

11. What organizations or types of organizations should NOT be involved
    in implementing these efforts? What makes them untrustworthy?

12. How much do you think people will trust a public education campaign
    that is conducted by the federal government? What specific federal
    agencies should be involved? Why?

**V. ADDITIONAL CONSIDERATIONS** (5 minutes)

1.  In your opinion, what are the **main** reasons why the public should
    be informed about the Nevada Test Site, I-131 exposure, and any
    potential health problems?

> IF NECESSARY, PROBE: Some people think the government has an
> obligation to let people know about the exposure from the Nevada Test
> Site primarily because some people could have been harmed by the
> fallout. Other people think that regardless of the level of harm
> people experienced the government has an obligation to inform the
> public because the public has a right to know about its government's
> actions. Which of these best represents your views? Why?

2.  Based on everything you know now, what if anything, would justify
    the Nevada atomic bomb testing?

IF NECESSARY, PROBE: People were exposed to radioactive material while
nuclear weapons were being tested for the purpose of defending our
country. What do you think about this?

3.  Do you think the government would have intentionally exposed people
    to radioactive material or do you think the government probably
    didn't know about the negative health effects that may be associated
    with the exposures until after the tests were already conducted?

4.  What else do you think needs to be done to address the issue of
    I-131 fallout from the Nevada Test Site that we have not talked
    about?

**VI. CLOSING** (5 minutes)

1\. CHECK WITH OBSERVERS FOR ADDITIONAL QUESTIONS.

2\. Those are all of the questions I have. Do you have any final
comments?

3.  Thanks for your participation today. I have some bookmarks that can
    provide you with current information about what we've discussed this
    evening. Feel free to take one before you leave.

**Additional Facts**

-   Thyroid cancer accounts for 1% of all cancers.

-   Some areas near the Nevada Test Site were highly exposed to I-131
    radiation. Other areas farther from Nevada also were highly exposed
    because weather patterns carried the radiation north and east of
    Nevada.

Study Estimating Thyroid Doses of I-131 Received by Americans from
Nevada Atmospheric Nuclear Bomb Tests

**Figure 1**

**Per capita thyroid doses resulting from all exposure routes from all
tests**

![](media/image3.png){width="6.125in" height="4.659722222222222in"}

### I.6 Tools for Research {#i.6-tools-for-research .unnumbered}

*(see next page)*

Table I.6.1 "Tools" typically utilized for communications planning
research.

+-------------+-------------+-------------+-------------+-------------+
| **Research  | **De        | **Pros**    | **Cons**    | **Common    |
| Method**    | scription** |             |             | Uses**      |
+=============+=============+=============+=============+=============+
| Surveys/Que | Que         |             |             |             |
| stionnaires | stionnaires |             |             |             |
|             | or survey   |             |             |             |
| (self-ad    | forms are   |             |             |             |
| ministered) | filled out  |             |             |             |
|             | by the      |             |             |             |
|             | respondents |             |             |             |
|             | themselves. |             |             |             |
|             | Clarity in  |             |             |             |
|             | question    |             |             |             |
|             | design and  |             |             |             |
|             | i           |             |             |             |
|             | nstructions |             |             |             |
|             | for         |             |             |             |
|             | completion  |             |             |             |
|             | are         |             |             |             |
|             | important.  |             |             |             |
+-------------+-------------+-------------+-------------+-------------+
| By mail     | Que         | • Ge        | • Not       | • Obtain    |
|             | stionnaires | neralizable | appropriate | baseline    |
|             | or survey   | results (if | for         | data        |
|             | forms are   | s           | respondents |             |
|             | sent to     | ufficiently | who cannot  | • Acquire   |
|             | potential   | large,      | read or     | se          |
|             | subjects    | probability | write       | lf-reported |
|             | for them to | sample with |             | information |
|             | complete on | high        | • Low       | on          |
|             | their own   | response    | response    | behaviors,  |
|             | time and    | rate)       | rate        | behavioral  |
|             | mail back   |             | diminishes  | intentions, |
|             | to          | • Can be    | value of    | attitudes   |
|             | researcher. | anonymous   | results.    |             |
|             |             | (especially | May require | • Determine |
|             |             | useful for  | follow-up   | message's   |
|             |             | highly      | by mail or  | reach,      |
|             |             | sensitive   | telephone   | attent      |
|             |             | topics)     | to increase | ion-getting |
|             |             |             | response    | ability     |
|             |             | •           | rate        |             |
|             |             | Respondents | (increases  | • Test      |
|             |             | can answer  | total       | knowledge,  |
|             |             | questions   | costs).     | co          |
|             |             | when most   |             | mprehension |
|             |             | convenient  | •           |             |
|             |             | for them    | Respondents |             |
|             |             |             | may return  |             |
|             |             | • Can       | incomplete  |             |
|             |             | collect     | que         |             |
|             |             | both        | stionnaires |             |
|             |             | program     |             |             |
|             |             | data and    | • Limited   |             |
|             |             | personal    | ability to  |             |
|             |             | data (e.g., | probe       |             |
|             |             | participant | answers     |             |
|             |             | chara       |             |             |
|             |             | cteristics) | •           |             |
|             |             |             | Respondents |             |
|             |             | • Does not  | may         |             |
|             |             | require     | self-select |             |
|             |             | staff time  | (potential  |             |
|             |             | to interact | bias)       |             |
|             |             | with target |             |             |
|             |             | population  | • May take  |             |
|             |             |             | long time   |             |
|             |             | • Can be    | to receive  |             |
|             |             | used to     | sufficient  |             |
|             |             | access      | numbers of  |             |
|             |             | difficu     | responses   |             |
|             |             | lt-to-reach |             |             |
|             |             | populations | • Does not  |             |
|             |             | (e.g., the  | yield       |             |
|             |             | homebound,  | reliable    |             |
|             |             | rural       | assessments |             |
|             |             | p           | of          |             |
|             |             | opulations) | attent      |             |
|             |             |             | ion-getting |             |
|             |             | • Can       | ability or  |             |
|             |             | incorporate | recall of   |             |
|             |             | visual      | message     |             |
|             |             | material    |             |             |
|             |             | (e.g., can  | • Postage   |             |
|             |             | pre-test    | may be very |             |
|             |             | prototype   | expensive   |             |
|             |             | materials)  | if sample   |             |
|             |             |             | is large    |             |
+-------------+-------------+-------------+-------------+-------------+
| By handout  | Respondents | • Can more  | • Not       | • Obtain    |
|             | are asked   | readily     | appropriate | baseline    |
|             | to complete | improve     | for         | data        |
|             | survey at a | response    | respondents |             |
|             | location    | rate        | who cannot  | • Acquire   |
|             | frequented  | because     | read or     | se          |
|             | by the      | there is an | write       | lf-reported |
|             | target      | opportunity |             | information |
|             | population  | to use      | • Must be   | on          |
|             | (e.g.,      | face-to-    | able to     | behaviors,  |
|             | during a    | face        | reach       | behavioral  |
|             | conference, | persuasion  | respondents | intentions, |
|             | in a        | tactics     | in person   | attitudes   |
|             | classroom,  |             | at a        |             |
|             | after       | • Can       | central     | • Test      |
|             | viewing an  | collect     | location or | knowledge,  |
|             | exhibit at  | both        | a gathering | co          |
|             | a health    | program     |             | mprehension |
|             | fair).      | data and    |             |             |
|             |             | personal    |             |             |
|             |             | data (e.g., |             |             |
|             |             | participant |             |             |
|             |             | chara       |             |             |
|             |             | cteristics) |             |             |
+-------------+-------------+-------------+-------------+-------------+
| By          | A           | • Useful    | • Not       | • Test      |
| C           | qu          | for complex | appropriate | knowledge,  |
| omputerized | estionnaire | que         | for         | co          |
| Self-a      | is          | stionnaires | audiences   | mprehension |
| dministered | programmed  | because     | who cannot  |             |
| Que         | and         | complex     | read or     | • Acquire   |
| stionnaires | displayed   | "skip       | those       | se          |
| (CSAQ)      | on a        | patterns"   | unfamiliar  | lf-reported |
|             | computer    | can be      | or          | information |
|             | screen with | pr          | un          | on          |
|             | respondents | eprogrammed | comfortable | behaviors,  |
|             | keying in   |             | with        | behavioral  |
|             | their       | • Can       | computers   | intentions, |
|             | answers.    | control     |             | attitudes   |
|             | Requires    | sequencing  | • Requires  |             |
|             | that        | of          | expensive   | • Pre-test  |
|             | respondents | questions   | technical   | visual      |
|             | have access |             | equipment   | material    |
|             | to          | • Can       | that may    |             |
|             | programmed  | provide     | not be      | • Determine |
|             | computers   | quick       | readily     | if audience |
|             | and that    | summary     | available   | attends to, |
|             | they be     | and/or      | or may be   | c           |
|             | somewhat    | analysis of | cumbersome  | omprehends, |
|             | familiar    | results by  | in many     | and         |
|             | and         | eliminating | settings    | remembers   |
|             | comfortable | the step of |             | contents of |
|             | with using  | data entry  |             | message.    |
|             | computers.  | from paper  |             |             |
|             |             | que         |             |             |
|             |             | stionnaires |             |             |
|             |             | or          |             |             |
|             |             | interviews  |             |             |
+-------------+-------------+-------------+-------------+-------------+
| Surveys/Que | A trained   |             |             |             |
| stionnaires | interviewer |             |             |             |
|             | asks survey |             |             |             |
| (a          | questions   |             |             |             |
| dministered | of          |             |             |             |
| by          | r           |             |             |             |
| i           | espondents. |             |             |             |
| nterviewer) | Allows      |             |             |             |
|             | respondent  |             |             |             |
|             | to ask for  |             |             |             |
|             | cl          |             |             |             |
|             | arification |             |             |             |
|             | and allows  |             |             |             |
|             | interviewer |             |             |             |
|             | to control  |             |             |             |
|             | question    |             |             |             |
|             | sequence.   |             |             |             |
+-------------+-------------+-------------+-------------+-------------+
| By          | Respondents | • Ge        | • Requires  | • Obtain    |
| telephone   | are         | neralizable | interviewer | baseline    |
|             | contacted   | results (if | training    | data        |
|             | via         | s           |             |             |
|             | telephone   | ufficiently | • Low       | • Determine |
|             | by trained  | large,      | response    | message's   |
|             | i           | probability | rate        | reach,      |
|             | nterviewer. | sample with | diminishes  | attent      |
|             | Respondents | high        | value of    | ion-getting |
|             | may be      | response    | results     | ability     |
|             | selected in | rate)       |             |             |
|             | advance     |             | • Potential | • Acquire   |
|             | from a list | •           | respondents | se          |
|             | or          | Appropriate | who do not  | lf-reported |
|             | contacted   | for those   | have a      | information |
|             | randomly    | of lower    | phone       | on          |
|             | (increases  | literacy    | cannot      | behaviors,  |
|             | gener       |             | participate | behavioral  |
|             | alizability | •           |             | intentions, |
|             | of          | Interviewer | •           | attitudes   |
|             | results).   | available   | Respondents |             |
|             |             | to clarify  | often hang  | • Test      |
|             |             | questions   | up if they  | knowledge,  |
|             |             | for         | believe the | com         |
|             |             | respondent  | survey is   | prehension. |
|             |             | and probe   | part of a   |             |
|             |             | answers     | s           |             |
|             |             |             | olicitation |             |
|             |             | • Decreased | call        |             |
|             |             | likelihood  |             |             |
|             |             | of          |             |             |
|             |             | incomplete  |             |             |
|             |             | que         |             |             |
|             |             | stionnaires |             |             |
+-------------+-------------+-------------+-------------+-------------+
| By          | Respondents | • Ge        | • C         | • Obtain    |
| comput      | are         | neralizable | onsiderable | baseline    |
| er-assisted | contacted   | results (if | development | data        |
| telephone   | via         | s           | work and    |             |
| i           | telephone   | ufficiently | lead time   | • Test      |
| nterviewing | by a        | large,      | are needed  | knowledge   |
| (CATI)      | trained     | probability | before      | and         |
| technology  | interviewer | sample with | survey      | co          |
|             | who has the | high        | imp         | mprehension |
|             | qu          | response    | lementation |             |
|             | estionnaire | rate)       |             | • Obtain    |
|             | displayed   |             | • Requires  | se          |
|             | on a        | • Can       | much        | lf-reported |
|             | computer    | program     | interviewer | information |
|             | terminal.   | allowable   | training    | regarding   |
|             | The         | codes for   |             | attitudes   |
|             | interviewer | responses   | • Not       | and         |
|             | enters data | which       | useful for  | behaviors.  |
|             | directly    | interviewer | small       |             |
|             | into the    | can use to  | samples     |             |
|             | computer.   | correct     | because the |             |
|             |             | mistakes    | workload    |             |
|             |             | during      | costs of    |             |
|             |             | interview   | CATI exceed |             |
|             |             |             | the         |             |
|             |             | • Can       | benefits    |             |
|             |             | program     |             |             |
|             |             | help menus  |             |             |
|             |             | to assist   |             |             |
|             |             | interviewer |             |             |
|             |             |             |             |             |
|             |             | • Computer  |             |             |
|             |             | controls    |             |             |
|             |             | question    |             |             |
|             |             | sequence,   |             |             |
|             |             | allowing    |             |             |
|             |             | complex     |             |             |
|             |             | "skip       |             |             |
|             |             | patterns"   |             |             |
|             |             |             |             |             |
|             |             | • Provides  |             |             |
|             |             | a more      |             |             |
|             |             | efficient   |             |             |
|             |             | means of    |             |             |
|             |             | generating  |             |             |
|             |             | a           |             |             |
|             |             | probability |             |             |
|             |             | sample      |             |             |
+-------------+-------------+-------------+-------------+-------------+
| F           | One-on-one, | • Ge        | • Can be    | • Obtain    |
| ace-to-face | in-person   | neralizable | more labor  | baseline    |
|             | interview   | results (if | intensive   | data        |
|             | is used to  | s           | than        |             |
|             | collect     | ufficiently | self-a      | • Determine |
|             | information | large,      | dministered | message's   |
|             | on          | probability | or          | reach,      |
|             | knowledge,  | sample with | telephone   | attent      |
|             | attitudes,  | high        | data        | ion-getting |
|             | and/or      | response    | collection  | ability     |
|             | behaviors.  | rate)       |             |             |
|             |             |             | • Less      | • Acquire   |
|             |             | •           | appropriate | se          |
|             |             | Appropriate | for         | lf-reported |
|             |             | for those   | sensitive   | information |
|             |             | of lower    | or          | on          |
|             |             | literacy    | threatening | behaviors,  |
|             |             |             | questions   | behavioral  |
|             |             | • Useful    | (           | intentions, |
|             |             | with        | respondents | attitudes   |
|             |             | difficu     | may not     |             |
|             |             | lt-to-reach | answer      | • Test      |
|             |             | populations | truthfully  | knowledge,  |
|             |             | (e.g.,      | in person)  | co          |
|             |             | homeless,   |             | mprehension |
|             |             | lo          |             |             |
|             |             | w-literacy) |             |             |
|             |             | or when     |             |             |
|             |             | target      |             |             |
|             |             | audience    |             |             |
|             |             | cannot be   |             |             |
|             |             | sampled     |             |             |
|             |             | using other |             |             |
|             |             | data        |             |             |
|             |             | collection  |             |             |
|             |             | methods     |             |             |
|             |             |             |             |             |
|             |             | •           |             |             |
|             |             | Interviewer |             |             |
|             |             | available   |             |             |
|             |             | to clarify  |             |             |
|             |             | questions   |             |             |
|             |             | for         |             |             |
|             |             | respondent  |             |             |
|             |             | and probe   |             |             |
|             |             | answers     |             |             |
|             |             |             |             |             |
|             |             | • Decreased |             |             |
|             |             | likelihood  |             |             |
|             |             | of          |             |             |
|             |             | incomplete  |             |             |
|             |             | que         |             |             |
|             |             | stionnaires |             |             |
+-------------+-------------+-------------+-------------+-------------+
| Central     | Potential   | • Can       | • Requires  | • Test      |
| location    | respondents | connect     | interviewer | program     |
| intercept   | are         | with        | training    | messages,   |
| interviews  | approached  | hard        |             | materials   |
|             | in a public | er-to-reach | • Quota     |             |
|             | area by a   | respondents | sample, not |             |
|             | trained     | in          | probability |             |
|             | interviewer | locations   | sample      |             |
|             | and invited | convenient  |             |             |
|             | to          | and         | • Not       |             |
|             | participate | comfortable | appropriate |             |
|             | in the      | for them    | for         |             |
|             | survey.     |             | sensitive   |             |
|             | Usually     | • Can be    | issues or   |             |
|             | conducted   | conducted   | potentially |             |
|             | in a        | quickly     | threatening |             |
|             | h           |             | questions   |             |
|             | igh-traffic | • Cos       |             |             |
|             | area (e.g., | t-effective | • Cannot    |             |
|             | mall,       | means of    | easily      |             |
|             | student     | gathering   | probe for   |             |
|             | union) or   | data in     | additional  |             |
|             | other area  | relatively  | information |             |
|             | frequented  | short time  | (too time   |             |
|             | by target   |             | consuming)  |             |
|             | population. | • Increased |             |             |
|             | Requires    | number of   |             |             |
|             | highly      | respondents |             |             |
|             | structured, | within      |             |             |
|             | pre         | intended    |             |             |
|             | -determined | population  |             |             |
|             | questions   | if          |             |             |
|             | that        | appropriate |             |             |
|             | primarily   | location    |             |             |
|             | use         | chosen      |             |             |
|             | mult        |             |             |             |
|             | iple-choice | • Larger    |             |             |
|             | or          | sample size |             |             |
|             | close-ended | than focus  |             |             |
|             | questions.  | groups      |             |             |
|             |             |             |             |             |
|             |             | •           |             |             |
|             |             |  Eliminates |             |             |
|             |             | group bias  |             |             |
|             |             | that is     |             |             |
|             |             | possible in |             |             |
|             |             | focus       |             |             |
|             |             | groups      |             |             |
+-------------+-------------+-------------+-------------+-------------+
| Written     | Information | • Can allow | • Requires  | • Track     |
| responses   | is          | respondents | c           | program     |
| to requests | requested   | more        | onsiderable | imp         |
| for         | in a        | flexibility | effort on   | lementation |
| information | specific    | in their    | r           |             |
| (e.g.,      | format from | replies     | espondents' | • Learn     |
| diaries,    | individuals |             | parts       | what        |
| activity    | i           | • Can       |             | questions   |
| logs,       | mplementing | enable      | • Incoming  | program     |
| anecdotal   | a program   | researchers | data may be | p           |
| accounts)   | or from     | to receive  | voluminous  | articipants |
|             | p           | reports on  | and         | had         |
|             | articipants | behavior    | challenging |             |
|             | themselves. | over time,  | to code and | • Learn     |
|             | Information | rather than | compare     | what        |
|             | may relate  | a           |             | technical   |
|             | to such     | "snapshot"  | • Not       | assistance  |
|             | issues as   |             | appropriate | was needed  |
|             | quality of  |             | for         | by program  |
|             | program     |             | respondents | staff       |
|             | components  |             | who have    |             |
|             | or how      |             | poor        |             |
|             | components  |             | writing     |             |
|             | are used by |             |             |             |
|             | target      |             |             |             |
|             | population. |             |             |             |
+-------------+-------------+-------------+-------------+-------------+
| Review of   | A           | • Use of    | •           | • Conduct   |
| existing    | structured  | existing    |  Diminished | needs       |
| data (e.g., | evaluation  | data means  | ability to  | assessment  |
| program     | of          | less effort | control     |             |
| r           | information | in data     | data points | • Track the |
| egistration | previously  | collection  | and data    | number of   |
| rolls,      | collected   |             | collection  | people      |
| grocery     | by local,   | • May be    | methods     | engaging in |
| store       | state, or   | inexpensive |             | a behavior  |
| receipt     | national    | if owner of |             | in a given  |
| tapes,      | agencies is | data        |             | locale      |
| hospital    | undertaken. | provides    |             | (e.g.,      |
| discharge   | Existing    | them at     |             | accessing   |
| records)    | sources of  | little or   |             | free        |
|             | health data | no cost     |             | mammography |
|             | (           |             |             | screening   |
|             | statistics, | • Possible  |             | services,   |
|             | tracking    | sources of  |             | purchasing  |
|             | records,    | data are    |             | sunscreen). |
|             | treatment   | plentiful   |             |             |
|             | patterns)   |             |             |             |
|             | may be      |             |             |             |
|             | available   |             |             |             |
|             | on the      |             |             |             |
|             | World Wide  |             |             |             |
|             | Web or      |             |             |             |
|             | through     |             |             |             |
|             | government  |             |             |             |
|             | agencies,   |             |             |             |
|             | local or    |             |             |             |
|             | university  |             |             |             |
|             | libraries,  |             |             |             |
|             | health      |             |             |             |
|             | d           |             |             |             |
|             | epartments, |             |             |             |
|             | clinics or  |             |             |             |
|             | hospitals,  |             |             |             |
|             | police      |             |             |             |
|             | d           |             |             |             |
|             | epartments, |             |             |             |
|             | schools,    |             |             |             |
|             | research or |             |             |             |
|             | nonprofit   |             |             |             |
|             | org         |             |             |             |
|             | anizations. |             |             |             |
|             | Or          |             |             |             |
|             | ganizations |             |             |             |
|             | may collect |             |             |             |
|             | data not    |             |             |             |
|             | originally  |             |             |             |
|             | intended as |             |             |             |
|             | health      |             |             |             |
|             | data, but   |             |             |             |
|             | useful      |             |             |             |
|             | n           |             |             |             |
|             | onetheless. |             |             |             |
|             | Examples    |             |             |             |
|             | include     |             |             |             |
|             | grocery     |             |             |             |
|             | store       |             |             |             |
|             | receipts    |             |             |             |
|             | and event   |             |             |             |
|             | attendance  |             |             |             |
|             | records.    |             |             |             |
|             | Analysis of |             |             |             |
|             | existing    |             |             |             |
|             | data is     |             |             |             |
|             | useful for  |             |             |             |
|             | all forms   |             |             |             |
|             | of          |             |             |             |
|             | evaluation  |             |             |             |
+-------------+-------------+-------------+-------------+-------------+
| In-depth    | Qualitative | • Can       | • Time      | • Develop   |
| personal    | data        | explore     | consuming   | concepts or |
| interviews  | collection  | long or     |             | messages    |
|             | method      | complex     | • Requires  |             |
|             | involves    | draft       | level of    | • Test long |
|             | less rigid  | materials   | trust       | or complex  |
|             | question    |             | between     | draft       |
|             | structure   | • Can be    | interviewer | materials   |
|             | and         | effective   | and         |             |
|             | i           | with those  | respondent, | • Conduct a |
|             | nterviewing | of lower    | especially  | needs       |
|             | style than  | literacy    | when        | assessment. |
|             | q           |             | dealing     |             |
|             | uantitative | • Allows    | with        |             |
|             | methods.    | c           | sensitive   |             |
|             |             | onsiderable | or          |             |
|             |             | opportunity | threatening |             |
|             |             | to probe    | material    |             |
|             |             | answers     |             |             |
|             |             |             | •           |             |
|             |             | • Allows    | Interviewer |             |
|             |             | for         | must be     |             |
|             |             | intensive   | highly      |             |
|             |             | in          | skilled in  |             |
|             |             | vestigation | active      |             |
|             |             | of          | listening,  |             |
|             |             | individual  | probing,    |             |
|             |             | thought,    | and other   |             |
|             |             | opinions,   | i           |             |
|             |             | and         | nterviewing |             |
|             |             | attitudes   | skills      |             |
|             |             |             |             |             |
|             |             |             | •           |             |
|             |             |             | Interviewer |             |
|             |             |             | must be     |             |
|             |             |             | kn          |             |
|             |             |             | owledgeable |             |
|             |             |             | about and   |             |
|             |             |             | sensitive   |             |
|             |             |             | to a        |             |
|             |             |             | r           |             |
|             |             |             | espondent's |             |
|             |             |             | culture or  |             |
|             |             |             | frame of    |             |
|             |             |             | reference   |             |
+-------------+-------------+-------------+-------------+-------------+
| Focus       | This tool   |             |             |             |
| groups      | is a        |             |             |             |
|             | qualitative |             |             |             |
|             | method of   |             |             |             |
|             | data        |             |             |             |
|             | collection  |             |             |             |
|             | wherein a   |             |             |             |
|             | skilled     |             |             |             |
|             | moderator   |             |             |             |
|             | facilitates |             |             |             |
|             | discussion  |             |             |             |
|             | on a        |             |             |             |
|             | selected    |             |             |             |
|             | topic among |             |             |             |
|             | 6 to 10     |             |             |             |
|             | r           |             |             |             |
|             | espondents, |             |             |             |
|             | allowing    |             |             |             |
|             | them to     |             |             |             |
|             | respond     |             |             |             |
|             | sp          |             |             |             |
|             | ontaneously |             |             |             |
|             | to the      |             |             |             |
|             | issues      |             |             |             |
|             | raised.     |             |             |             |
|             | Lasts for   |             |             |             |
|             | 60 to 90    |             |             |             |
|             | minutes per |             |             |             |
|             | session.    |             |             |             |
|             | For focus   |             |             |             |
|             | group       |             |             |             |
|             | research to |             |             |             |
|             | be most     |             |             |             |
|             | valuable,   |             |             |             |
|             | the         |             |             |             |
|             | moderator   |             |             |             |
|             | must cover  |             |             |             |
|             | the         |             |             |             |
|             | research    |             |             |             |
|             | topics,     |             |             |             |
|             | establish   |             |             |             |
|             | an          |             |             |             |
|             | environment |             |             |             |
|             | in which    |             |             |             |
|             | all points  |             |             |             |
|             | of view are |             |             |             |
|             | welcome,    |             |             |             |
|             | and follow  |             |             |             |
|             | up on       |             |             |             |
|             | unexpected  |             |             |             |
|             | but         |             |             |             |
|             | potentially |             |             |             |
|             | valuable    |             |             |             |
|             | topics that |             |             |             |
|             | are raised. |             |             |             |
+-------------+-------------+-------------+-------------+-------------+
| F           | When focus  | •           | • Findings  | • Explore   |
| ace-to-face | groups are  | Interaction | not         | complex     |
|             | conducted   | in the      | ge          | topics with |
|             | in person,  | group can   | neralizable | target      |
|             | p           | help elicit |             | audience    |
|             | articipants | in-depth    | •           | prior to    |
|             | and the     | thought and | Respondents | program     |
|             | moderator   | discussion  | may be      | (e.g., what |
|             | gather,     |             | concerned   | he          |
|             | usually     | • C         | about lack  | lps/hinders |
|             | around a    | onsiderable | of          | healthy     |
|             | table.      | opportunity | anonymity   | eating)     |
|             | Observers   | to probe    |             |             |
|             | (members of | answers     | • Can be    | • Learn     |
|             | the         |             | labor       | about       |
|             | research    | • Can yield | intensive   | feelings,   |
|             | team) sit   | richer data | and         | motivators, |
|             | behind a    | than        | expensive,  | past        |
|             | one-way     | surveys     | especially  | experiences |
|             | mirror or   | about the   | if groups   | related to  |
|             | un          | c           | are         | a health    |
|             | obtrusively | omplexities | conducted   | topic       |
|             | back from   | of          | in multiple |             |
|             | the table   | audience's  | locations   | • Test      |
|             | and take    | thinking    |             | concepts,   |
|             | notes.      | and         |             | message,    |
|             | Groups may  | behavior    |             | materials,  |
|             | also be     |             |             | and artwork |
|             | recorded by | • In-person |             |             |
|             | audio- or   | groups give |             | • Can       |
|             | videotape.  | moderator   |             | generate    |
|             |             | more        |             | and test    |
|             |             | opportunity |             | hypotheses. |
|             |             | to read     |             |             |
|             |             | nonverbal   |             |             |
|             |             | cues and    |             |             |
|             |             | use         |             |             |
|             |             | nonverbal   |             |             |
|             |             | cues to     |             |             |
|             |             | control the |             |             |
|             |             | flow of     |             |             |
|             |             | discussion  |             |             |
|             |             | than in     |             |             |
|             |             | telephone   |             |             |
|             |             | focus       |             |             |
|             |             | groups      |             |             |
|             |             |             |             |             |
|             |             | • Rapport   |             |             |
|             |             | can be      |             |             |
|             |             | fostered    |             |             |
|             |             | more easily |             |             |
|             |             | among       |             |             |
|             |             | in-person   |             |             |
|             |             | groups than |             |             |
|             |             | telephone   |             |             |
|             |             | groups      |             |             |
+-------------+-------------+-------------+-------------+-------------+
| By          | When focus  | •           | • Findings  | • Explore   |
| telephone   | groups are  | Interaction | not         | complex     |
|             | conducted   | in group    | ge          | topics with |
|             | by          | can help    | neralizable | target      |
|             | telephone,  | elicit      |             | audience    |
|             | the         | in-depth    | •           | prior to    |
|             | moderator   | thought and | Respondents | program     |
|             | and         | discussion  | may be      | (e.g., what |
|             | p           |             | concerned   | he          |
|             | articipants | • C         | about lack  | lps/hinders |
|             | speak by    | onsiderable | of          | healthy     |
|             | conference  | opportunity | anonymity   | eating)     |
|             | call with   | to probe    |             |             |
|             | observers   | answers     | • Telephone | • Learn     |
|             | listening   |             | groups tend | about       |
|             | and taking  | • Can yield | to work     | feelings,   |
|             | notes.      | richer data | best when   | motivators, |
|             | Telephone   | than        | p           | past        |
|             | groups may  | surveys     | articipants | experiences |
|             | be recorded | about the   | have        | related to  |
|             | by          | c           | tangible    | a health    |
|             | audiotape.  | omplexities | materials   | topic       |
|             | Typically,  | of          | to which    |             |
|             | 6 to 8      | audience's  | they can    | • Test      |
|             | people      | thinking    | respond     | concepts,   |
|             | p           | and         | (e.g.,      | message,    |
|             | articipate. | behavior    | pre-testing | materials,  |
|             |             |             | materials). | and artwork |
|             |             | • Telephone |             |             |
|             |             | focus       | • Long      | • Generate  |
|             |             | groups can  | distance    | and test    |
|             |             | be more     | phone bills | hypotheses. |
|             |             | easily      | for groups  |             |
|             |             | convened    | can be      |             |
|             |             | than        | expensive,  |             |
|             |             | in-person   | especially  |             |
|             |             | groups when | if many     |             |
|             |             | pa          | people      |             |
|             |             | rticipants' | listen in   |             |
|             |             | occupations |             |             |
|             |             | /lifestyles | •           |             |
|             |             | afford      |  Productive |             |
|             |             | little free | sessions by |             |
|             |             | time (e.g., | phone       |             |
|             |             | doctors,    | cannot      |             |
|             |             | mayors);    | usually be  |             |
|             |             | reduce      | sustained   |             |
|             |             | travel      | more than 1 |             |
|             |             | burden on   | to 1½ hours |             |
|             |             | research    |             |             |
|             |             | staff; and  |             |             |
|             |             | can allow   |             |             |
|             |             | for broad   |             |             |
|             |             | geographic  |             |             |
|             |             | rep         |             |             |
|             |             | resentation |             |             |
|             |             |             |             |             |
|             |             | • Allow for |             |             |
|             |             | project     |             |             |
|             |             | staff and   |             |             |
|             |             | partners to |             |             |
|             |             | listen from |             |             |
|             |             | their homes |             |             |
|             |             | or offices  |             |             |
+-------------+-------------+-------------+-------------+-------------+
| Theater     | Q           | • Can       | •           | • Test      |
| testing     | uantitative | gather      | Significant | audiovisual |
|             | data is     | q           | production  | materials   |
|             | collected   | uantitative | costs       | with many   |
|             | from a      | data from   | associated  | respondents |
|             | large group | large group | with making | at once     |
|             | of          | at once     | draft       |             |
|             | respondents |             | materials   |             |
|             | (generally  | • Data      | available   |             |
|             | 60- 100     | available   | to test     |             |
|             | people per  | immediately |             |             |
|             | session)    |             | • Limited   |             |
|             | who respond | • Showing   | ability to  |             |
|             | to          | "actual"    | ask         |             |
|             | a           | audiovisual | open-ended  |             |
|             | udio-visual | materials   | questions   |             |
|             | materials   | allows more |             |             |
|             | (e.g.,      | realism     | • Rely on   |             |
|             | c           | than        | te          |             |
|             | ommercials, | storyboards | chnological |             |
|             | PSAs). Some |             | equipment   |             |
|             | messages    | • Using     | that may    |             |
|             | shown are   | control     | not be      |             |
|             | controls    | messages    | readily     |             |
|             | and others  | allows more | accessible  |             |
|             | are being   | realism     |             |             |
|             | tested,     |             |             |             |
|             | allowing    |             |             |             |
|             | for a more  |             |             |             |
|             | "real life" |             |             |             |
|             | assessment  |             |             |             |
|             | of message  |             |             |             |
|             | concepts.   |             |             |             |
|             | Respondents |             |             |             |
|             | answer      |             |             |             |
|             | que         |             |             |             |
|             | stionnaires |             |             |             |
|             | or respond  |             |             |             |
|             | ele         |             |             |             |
|             | ctronically |             |             |             |
|             | means.      |             |             |             |
+-------------+-------------+-------------+-------------+-------------+
| Ob          | Individuals | • Can       | • Can be    | • Counting  |
| servational | are         | observe     | labor       | people      |
| studies     | observed in | behaviors   | intensive;  | accessing a |
|             | a natural   | or program  | requires    | service     |
|             | setting     | imp         | site visits |             |
|             | with        | lementation |             | • Assessing |
|             | minimal     | directly    | • Many      | the         |
|             | observer    |             | behaviors   | consistency |
|             | interaction |             | and program | with which  |
|             | (e.g.,      |             | activities  | a service   |
|             | observing   |             | not easily  | is          |
|             | shoppers in |             | observed    | delivered   |
|             | a grocery   |             |             | (e.g.,      |
|             | store to    |             | • Presence  | whether     |
|             | see if they |             | of observer | r           |
|             | are reading |             | can alter   | egistration |
|             | posted      |             | behavior of | desk clerks |
|             | nutritional |             | those being | mention a   |
|             | charts)     |             | observed    | program to  |
|             |             |             |             | all         |
|             |             |             | • Ethics of | potential   |
|             |             |             | observing   | pa          |
|             |             |             | people      | rticipants) |
|             |             |             | without     |             |
|             |             |             | their       | • Observing |
|             |             |             | knowledge   | whether     |
|             |             |             | may be      | skills      |
|             |             |             | questioned  | (e.g.,      |
|             |             |             |             | testing     |
|             |             |             |             | blood       |
|             |             |             |             | sugar) have |
|             |             |             |             | been        |
|             |             |             |             | learned     |
|             |             |             |             | correctly   |
|             |             |             |             |             |
|             |             |             |             | • Useful    |
|             |             |             |             | for         |
|             |             |             |             | observing   |
|             |             |             |             | behavior at |
|             |             |             |             | baseline,   |
|             |             |             |             | during a    |
|             |             |             |             | program,    |
|             |             |             |             | and after   |
|             |             |             |             | it ends.    |
+-------------+-------------+-------------+-------------+-------------+
| Readability | Estimates   | •           | • "Rule of  | • Increase  |
| testing     | the         | Inexpensive | thumb"      | likelihood  |
|             | educational |             | only, not   | that        |
|             | level       | • Test can  | predictive  | materials   |
|             | required    | be          | of readers' | will be     |
|             | for target  | performed   | ability to  | com         |
|             | population  | very        | understand  | prehensible |
|             | to          | quickly     | content     | for those   |
|             | adequately  |             |             | with lower  |
|             | comprehend  |             | • Must be   | literacy    |
|             | written     |             | interpreted | levels      |
|             | materials   |             | with        |             |
|             | (i.e., if a |             | caution     |             |
|             | pamphlet's  |             | because     |             |
|             | readability |             | many        |             |
|             | level is    |             | additional  |             |
|             | sixth       |             | factors can |             |
|             | grade,      |             | enhance or  |             |
|             | readers     |             | diminish    |             |
|             | need to     |             | co          |             |
|             | read at     |             | mprehension |             |
|             | about the   |             | of written  |             |
|             | sixth grade |             | material    |             |
|             | level in    |             | (e.g., the  |             |
|             | order to    |             | conceptual  |             |
|             | comprehend  |             | context of  |             |
|             | the         |             | the         |             |
|             | pamphlet..  |             | material,   |             |
|             | Readability |             | reader's    |             |
|             | tests are   |             | motivation  |             |
|             | available   |             | or interest |             |
|             | on many     |             | in the      |             |
|             | standard    |             | material,   |             |
|             | word        |             | layout of   |             |
|             | processing  |             | concepts in |             |
|             | packages or |             | a passage,  |             |
|             | a test can  |             | use of      |             |
|             | easily be   |             | graphics    |             |
|             | computed by |             | and         |             |
|             | hand.       |             | symbols)    |             |
+-------------+-------------+-------------+-------------+-------------+
| Expert      | An analysis | •           | • Risk of   | • Obtain    |
| review      | of program  | Inexpensive | experts     | input prior |
|             | material or |             | seeking to  | to program  |
|             | approaches  | • Can help  | take over   | design from |
|             | is          | obtain      | or          | experts in  |
|             | performed   | support or  | radically   | a health    |
|             | by          | "buy in"    | change      | field or    |
|             | individuals | for your    | program     | who have    |
|             | who are     | program     | plans       | experience  |
|             | p           |             |             | working     |
|             | articularly |             | • Can be    | with your   |
|             | kn          |             | challenging | target      |
|             | owledgeable |             | to          | audience    |
|             | in a        |             | reconcile   |             |
|             | content     |             | differing   | • Ensure    |
|             | area.       |             | viewpoints  | that your   |
|             | Reviewers   |             |             | messages    |
|             | may check   |             |             | are         |
|             | such issues |             |             | sci         |
|             | as          |             |             | entifically |
|             | scientific  |             |             | accurate    |
|             | and         |             |             |             |
|             | technical   |             |             | • Test      |
|             | accuracy or |             |             | program     |
|             | cultural    |             |             | materials   |
|             | appro       |             |             | (e.g.,      |
|             | priateness. |             |             | ensure      |
|             | Reviewers   |             |             | materials   |
|             | may be      |             |             | are         |
|             | individuals |             |             | culturally  |
|             | such as     |             |             | ap          |
|             | medical     |             |             | propriate). |
|             | research    |             |             |             |
|             | scientists, |             |             |             |
|             | social      |             |             |             |
|             | workers,    |             |             |             |
|             | law         |             |             |             |
|             | enforcement |             |             |             |
|             | officials,  |             |             |             |
|             | teachers,   |             |             |             |
|             | or          |             |             |             |
|             | community   |             |             |             |
|             | leaders.    |             |             |             |
+-------------+-------------+-------------+-------------+-------------+
| Gatekeeper  | The         | •           | • Can cause | • Ensure    |
| Review      | appr        | Inexpensive | setbacks if | that        |
|             | opriateness |             | major       | messages    |
|             | of draft    | • Can help  | revisions   | will be     |
|             | program     | obtain      | are needed  | d           |
|             | material    | support or  | (project    | isseminated |
|             | for a       | "buy in"    | staff can   | and program |
|             | target      | for your    | plan ahead  | plans       |
|             | audience is | program     | and use     | carried out |
|             | assessed by |             | formative   | by          |
|             | individuals | • Can       | research to | obtaining   |
|             | who can     | ensure and  | avoid this) | gatekeeper  |
|             | facilitate, | smooth      |             | approval    |
|             | complicate, | access to   | • Obtaining | prior to    |
|             | or deny     | target      | cooperation | program     |
|             | access to   | populations | and getting | di          |
|             | target      |             | priority    | ssemination |
|             | population  |             | attention   |             |
|             | (e.g.,      |             | can be      | • Obtain    |
|             | those who   |             | challenging | "buy in"    |
|             | control     |             | if          | from        |
|             | d           |             | gatekeepers | influential |
|             | istribution |             | are not     | people who  |
|             | channels).  |             | especially  | control     |
|             | Gatekeeper  |             | invested in | d           |
|             | commitment  |             | the         | istribution |
|             | may be      |             | population  | channels    |
|             | necessary   |             |             |             |
|             | to ensure   |             |             | • Ensure    |
|             | that a      |             |             | that        |
|             | program     |             |             | products    |
|             | will be     |             |             | conform to  |
|             | implemented |             |             | gatekeeper  |
|             | as planned. |             |             | agency      |
|             |             |             |             | policies    |
|             |             |             |             | and goals   |
|             |             |             |             | (e.g.,      |
|             |             |             |             | television  |
|             |             |             |             | station     |
|             |             |             |             | regulations |
|             |             |             |             | for PSAs)   |
+-------------+-------------+-------------+-------------+-------------+
| Media       | Content     | • Allows    | • Review of | • Conduct   |
| tracking    | c           | tracking of | data is     | needs       |
|             | ommunicated | media that  | time        | assessment  |
| (print,     | by mass     | can be      | consuming   |             |
| audio, or   | media       | influential |             | • Track     |
| audiovisual | outlets     | for the     | • May       | changes in  |
| media)      | (e.g.,      | target      | require     | media       |
|             | television, | audience    | training of | treatment   |
|             | radio,      |             | readers or  | of a topic  |
|             | billboard   | • Allows    | video       | in response |
|             | adve        | health      | viewers if  | to an event |
|             | rtisements) | co          | automated   | or program  |
|             | is tracked  | mmunicators | tracking is |             |
|             | and         | to better   | not used    | • Identify  |
|             | analyzed    | understand  |             | issues      |
|             | syst        | patterns of | • Print and | addressed   |
|             | ematically. | media       | video       | by media    |
|             | A           | attention   | clipping    | channels    |
|             | p           | given their | services    | that focus  |
|             | rofessional | topic       | are         | on          |
|             | service     |             | expensive   | program's   |
|             | typically   |             |             | target      |
|             | is hired to |             |             | audience    |
|             | do the      |             |             |             |
|             | tracking if |             |             | • Discern   |
|             | the range   |             |             | whether     |
|             | of media    |             |             | media       |
|             | sources     |             |             | outlets are |
|             | extends     |             |             | di          |
|             | much beyond |             |             | sseminating |
|             | the local   |             |             | program     |
|             | level.      |             |             | messages as |
|             |             |             |             | hoped or    |
|             |             |             |             | planned     |
+-------------+-------------+-------------+-------------+-------------+
| Source:     |             |             |             |             |
| CDCynergy:  |             |             |             |             |
| Your health |             |             |             |             |
| co          |             |             |             |             |
| mmunication |             |             |             |             |
| planning    |             |             |             |             |
| and         |             |             |             |             |
| evaluation  |             |             |             |             |
| tool.       |             |             |             |             |
| Version     |             |             |             |             |
| 1.0.        |             |             |             |             |
| Centers for |             |             |             |             |
| Disease     |             |             |             |             |
| Control and |             |             |             |             |
| Prevention; |             |             |             |             |
| Office of   |             |             |             |             |
| Com         |             |             |             |             |
| munication. |             |             |             |             |
| July 1998.  |             |             |             |             |
+-------------+-------------+-------------+-------------+-------------+

### I.7 NCI's ^131^I/NTS Communications Campaign and Process Evaluation Plan {#i.7-ncis-131ints-communications-campaign-and-process-evaluation-plan .unnumbered}

#### I.7.1 NCI's ^131^I/NTS Communications Campaign  {#i.7.1-ncis-131ints-communications-campaign .unnumbered}

The goals of NCI's ^131^I/NTS Communications Campaign were:

-   To inform health care providers (via health provider organizations)
    who conduct thyroid screening and education about the availability
    of NCI's I-131 materials, especially those practicing in significant
    fallout areas

-   To inform consumer organizations that focus on health education
    needs of people ages 40 and older, with particular emphasis on
    groups responsible for thyroid education, about the availability of
    NCI's I-131 materials

-   To inform federal agencies about the availability of NCI's I-131
    materials for incorporation into their communication channels

-   To make information about I-131 materials easily accessible for use
    by interested consumers, the public at large and advocacy
    organizations for inclusion in their communication channels

In December 2002, the NCI released communication materials for the
Project, developed with extensive input from advocacy groups, community
representatives and health officials, as well as extensive focus group
testing. Materials included:

-   **Get the Facts About Exposure to I-131 Radiation\--**This general
    information brochure provides information about the Nevada tests and
    identifies individuals at particular risk.

-   **Making Choices: Screening for Thyroid Disease\--** This decision
    aid workbook/brochure is for individuals concerned about their
    exposure to I-131 from fallout (Based on decision support format of
    the Ottawa Health Decision Center at the University of Ottawa and
    Ottawa Health Research Institute, Ontario, Canada)

-   **Radioactive Iodine (I-131) and Thyroid Cancer\--**This flip chart,
    designed for use in small groups of up to 10 people, addresses
    concerns specific to Native Americans.

-   **I-131 Web Site**
    ([www.cancer.gov/i131](http://www.cancer.gov/i131)), which includes
    tools for partners ("swiss cheese" press release, promotional
    brochure, etc.)

In order to accomplish these goals, by June 2003, NCI had accomplished
the following

-   Held a national teleconference (Dec 2002), at which NCI staff and
    invited experts discussed pertinent I-131 issues and plans for
    public promotion and dissemination of the materials

-   Disseminated materials to project partners

-   Within key exposure areas[^9], disseminated materials through email
    and US postal service. Efforts concentrated on reaching key
    intermediaries\-- health provider associations, community health
    clinics, advocacy and support groups, community-based networks,
    state health agencies, schools of public health, social workers, and
    federal agencies (including local clinics of the Indian Health
    Service.) (Full list follows). These intermediaries were provided
    tools to reach secondary audiences, which include individual health
    care providers and the concerned public aged 40 and older,
    particularly those who lived in areas of highest exposure and who
    consumed milk during the testing period.

```{=html}
<!-- -->
```
-   Conducted follow up calls to key organizations to ascertain interest
    in additional activities

In sum, the NCI conducted direct outreach with over 1000 local, regional
and national organizations (see attached list).

#### I.7.2 NCI's ^131^I/NTS Process Evaluation Plan {#i.7.2-ncis-131ints-process-evaluation-plan .unnumbered}

In evaluating the promotion and dissemination efforts of the NCI's
^131^I/NTS Communications Campaign, the NCI developed the following
measurable objectives:

1.  By January 31, 2003, NCI will send promotional materials and
    educational products to all organizations on the original
    recruitment list.

2.  By January 31, 2003, NCI will send promotional materials and
    educational products to health professional, consumer health,
    advocacy, and federal organizations identified by key
    stakeholders[^10].

3.  NCI will send promotional materials to 100% of organizations who
    request information on the educational products.

4.  By December 31, 2002, NCI will conduct a teleconference to launch
    the materials with the media and key stakeholders.

5.  By February 3, 2003, NCI will send I-131 promotional materials to
    100% of specified NIH and NCI-affiliated groups

6.  By February 10, 2003, NCI will send I-131 promotional materials and
    educational products to 100% of specified core thyroid health groups

7.  By February 17, 2003, NCI will send I-131 promotional materials and
    educational products to 100% of specified general medical societies
    and primary care institutions

8.  By February 27, 2003, NCI will send I-131 promotional materials and
    educational products to 100% of specified consumer health
    organizations

9.  By February 21, 2003, NCI will send I I-131 promotional materials
    and educational products to 100% of specified Federal agencies (see
    Appendix B. Promotion Plan).

10. By July 3, 2003, NCI will follow-up with 100% of specified core
    thyroid health specific groups

A Process Evaluation Template, which includes evaluation questions,
indicators, measures, process objectives, data sources, and frequency of
data collection was developed. Data is to be analyzed in 2003.

**This list represents over 450 national organizations/groups who
received I-131 promotional materials disseminated by the Office of
Cancer Communications in December 2002 \[in addition to 121 Members of
Congress\].**

AARP

Agency for Toxic Substances and Disease Registry

Alliance for Nuclear Accountability

Alliance of Atomic Veterans

American College of Preventive Medicine

American Thyroid Association (1000)

Association of State and Territorial Health Officials

ATSDR (1000)

Baltimore City Department of Health

Center for American Indian Research and Education

Center for Global Security & Health, Physicians for Social
Responsibility

CDC: State Radiation Directors (54)

CDC: Division of Health Communication-Childhood Cancer Research
Institute and Clark University

Colorado Department of Public Health and Environment

Conference of Radiation Control Program Directors

Consumers Union

Council of State and Territorial Epidemiologists

Decision Research

US Department of Health and Human Services

Vanderbilt University-Department of Radiology

Dine Care Group

Downwinders, Inc.

Elder Voices, Inc.

Hanford Health Information Network Resource Center

HRSA: radiation education grantees (36)

HRSA: Bureau of Primary Health Care: Primary and community health
centers in high-exposed counties (390)

Idaho Division of Health

Indigenous Environmental Network

Institute for Energy and Environmental Research

Institute for Energy and Environmental Research

Interpretive Consultations, Inc, Risk Communication and Environmental
Education

Iowa Dept. of Public Health

Johns Hopkins University School of Hygiene and Public Health

Mallinckrodt Institute of Radiology-Washington University School of
Medicine

Mayo Medical School-Mayo Clinic Rochester

Memorial Sloan-Kettering Cancer Center

Miamisburg Environmental Safety and Health

Migrant Clinicians Network

Migrant Head Start Quality Improvement Center

Morgan County Medical Center

Morgan County Medical Center

NAACP-Oak Ridge, TN

National Association of County and City Health Officials

National Association of Radiation Survivors

National Center for Environmental Health

National Center for Farmworker Health

National Committee for Radiation Victims

National Congress of American Indians

National Institute of Diabetes and Digestive and Kidney Diseases

National Medical Association

Natural Resources Defense Council

Navaho Uranium Radiation Victims Committee

Directors Consumer Liaison Group-National Cancer Institute

Nevada State Health Division

New England Journal of Medicine

New York Presbyterian Hospital- Weill Medical College of Cornell
University

New York State Department of Health

Nuclear Information & Resource Service

Oak Ridge Environmental Justice Committee

Oregon Department of Human Services

Oregon Health Division Environmental and Occupational Epidemiology

Pew Environmental Health Commission

Physicians for Social Responsibility

Porter Novelli

Public Interest Research Group- United States

Radiation and Public Health Project

Radiation Health Effects Archives

Radiological Health Section, Nevada State Health Division

Redish & Associates, Inc.

Rutgers University

Scarboro Community Environmental Justice Council

SENES Oak Ridge, Inc.

Short Cressman & Burgess PLLC

Sinai Hospital of Baltimore

Sisters of Charity of Ottawa Health Services

Snake River Alliance

Social and Environmental Research Institute

Standing for the Truth About Radiation

Support and Education for Radiation Victims

Tennessee Department of Environment and Conservation

The Endocrine Society

The National Academies

Thyroid Disease Information Source

Tufts University, Editor in Chief, Medicine and Global Survival

U.S. Department of Health and Human Services

University of Colorado School of Medicine

University of North Carolina at Chapel Hill School of Public Health

UPMC News Bureau

Uranium Education Program

Utah Department of Health, Bureau of Epidemiology

Vanchieri Communications

Western States Legal Foundation

Women\'s Action for New Directions

World Health Organization-Regional Office for Europe

**This list represents over 200 national organizations/groups and their
affiliates or chapters who received I-131 promotional materials
disseminated by the Office Education and Special Initiatives in Spring
2003.**

Alaska Native Tribal Health Consortium

American Academy of Family Physicians (chapter heads in 20 states)

American Academy of Nurse Practitioners

American Academy of Physician Assistants

American Association of Cancer Education

American Association of Retired Persons (local chapters and
clearinghouse)

American Board of Internal Medicine

American Cancer Society (divisional offices)

American College of Obstetricians and Gynecologists

American College of Preventative Medicine

American Indian Institute

American Medical Association

American Nurses Association (state/local chapters in priority regions)

American Public Health Association

Association of American Indian Physicians

Association of Community Cancer Centers

Center for Medicaid and Medicare Services

Centers for Disease Control and Prevention

Chronic Disease Directors (communications committee)

Environmental Protection Agency (American Indian Environmental Office)

Indian Health Service (American Indian Environmental Office)

National Association of Community Health Centers (20 risk states)

National Association of County and City Health Officials

National Association of Social Workers

National Association of State Directors of Migrant Education

National Black Nurses Association

National Center for Farmworker Health

National Council of La Raza

National Hispanic Medical Association

National Hispanic Nurses Association

National Indian Health Board

National Medical Association (local and state societies)

National Rural Health Association

Native American Cancer Initiative

Native American Health Issues

Office of Minority Health (HHS clearinghouse)

Office of Minority Health Affairs

Older Women's League

Oncology Nursing Society -- Special interest committees: Cancer Program
Development, Management: Patient Education and Prevention, Early
Detection Special Interest Groups

Thyroid Cancer Survivors' Association (local chapters)

Veterans Administration

[^1]: ^\*^ Message concepts, also called creative concepts, are simple
    graphics paired with headlines and taglines designed to elicit
    responses from audience groups and get them talking about the issue
    in very concrete terms.

[^2]: At the time of the workshop, it was anticipated that the ACERER
    meeting to address screening issues would be held in April 2000. The
    meeting has since been scheduled for June, 2000.

[^3]: *Exposure of the American People to Iodine-131 from Nevada Nuclear
    Bomb Tests: Review of the National Cancer Institute Report and
    Public Health Implications.* 1999. National Academy Press:
    Washington, DC

[^4]: Ms. Pritikin was a Working Group member who prepared a document,
    "NTS History," which was included in the packet of materials for
    workshop participants.

[^5]: *Estimated Exposures and Thyroid Doses Received by the American
    People from Iodine-131 in Fallout Following Nevada Atmospheric
    Nuclear Bomb Tests.* 1997. U.S. Department of Health and Human
    Services, National Institutes of Health, National Cancer Institute.

[^6]: During the Workshop, this group was frequently referred to as the
    "Campaign Development Group" or "CDG." Since then, NCI staff have
    elected instead to call the group a "Communications Development
    Group" to be more encompassing of all the efforts involved in
    communications planning.

[^7]: The higher-exposure and lower exposure public definitions were
    extracted from NCI's report, "Estimated Exposures and Thyroid Doses
    Received by the American People from Iodine-131 in Fallout Following
    Nevada Atmospheric Nuclear Bomb Tests: A Report from the National
    Cancer Institute" (NIH Pub #97-4264), which outlined the key risk
    factors due to I-131 exposure. Participants had to be ages 39 to 64
    because that is the present age of the individuals who were ages 0
    to 15 during the time of the Nevada testing. The 18 states
    designated as high exposure by the report were: Arkansas, Colorado,
    Idaho, Illinois, Iowa, Kansas, Minnesota, Missouri, Montana,
    Nebraska, Nevada, North Dakota, Oklahoma, South Dakota, Utah,
    Vermont, Wisconsin, and Wyoming.

[^8]: It should be noted that earlier research, in the form of in-depth
    interviews, was conducted in November 1999 with advocates,
    scientific experts, and public health experts to obtain the
    viewpoint of those more cognizant of the I-131 health issue.

[^9]: Twenty states received the highest fallout and include: Montana,
    Nevada, Utah, Colorado, North Dakota, South Dakota, Nebraska,
    Kansas, Oklahoma, Missouri, Arkansas, Minnesota, Iowa, Wisconsin,
    Illinois, Wyoming, Idaho, Indiana, Texas and Vermont. There are 7
    states (Massachusetts, Tennessee, New York, Oregon, Ohio, Michigan
    and Louisiana) in which only a few counties within each state were
    affected.

[^10]: Group of key informants representing health professional,
    consumer health, advocacy and federal organization who are
    interested in I-131 issues and who were identified by NCI at the
    project's inception. Largely consists of members of NCI's I-131
    listserv.