# American Health Information Community

**Workgroup on Consumer Empowerment**

Summary of Web Conference held April 25, 2006

(4^th^ Web Conference of this Workgroup)

-   **Broad Charge for the Workgroup:** Make recommendations to the
    Community to gain widespread adoption of a personal health record
    (PHR) that is easy to use, portable, longitudinal, affordable, and
    consumer centered.

-   **Specific Charge for the Workgroup:** Make recommendations to the
    Community so that within 1 year, a prepopulated, consumer-directed,
    and secure electronic registration summary is available to targeted
    populations. Make additional recommendations to the Community so
    that within 1 year, a widely available, prepopulated medication
    history linked to the registration summary is deployed.

**1. Call to Order and Welcome by the Workgroup Co-chairs**

The Web Conference was called to order by Co-chair Linda Springer of the
Office of Personnel Management. Co-chair Nancy Davenport-Ennis was
unable to attend. Ms. Springer opened the meeting by welcoming the
participants and thanking the Office of the National Coordinator for
Health Information Technology (ONC) staff for working with the subgroups
to develop the draft documents for discussion today.

**2. Roll Call of Participants**

Meeting participants were introduced. (See the list of participants at
the end of this document.)

**3. Review of the Meeting Agenda and Desired Outcomes**

Ms. Springer reviewed the agenda for this meeting: hearing from the
subgroups on work they have been doing, accepting their recommendations
and proposing changes as needed, and hearing updates from research
conducted by Blue Cross Blue Shield (BCBS) and the Markle Foundation.
She stated that the main goal was to adopt the recommendations from the
subgroups and plan for the presentation to the Community, specifically
focusing on the draft recommendation letter that will be sent on May 8.

**4. Review of Action Items from Last Meeting on March 20**

Ms. Springer noted that during the last meeting, consensus was reached
on the guiding principles and no further input is needed. Also during
the last meeting, the participants held a discussion on the scope of the
Health Insurance Portability and Accountability Act of 1996 (HIPAA) as
it pertains to PHRs.

A discussion was held on the methods and means for submission of
concrete recommendations to the Community, and a timeline was developed
for getting to the May 8 deadline. A consensus was reached that
subgroups would take over the development of the recommendations. A
discussion draft letter was developed that incorporated the
recommendations of the subgroups.

**5. Update by the BCBS Association and the Markle Foundation on
Research Relevant to the Breakthrough Project**

*BCBS Association*

Justine Handelman reported on a set of findings that respond to
important issues raised during the last Workgroup meeting regarding
which aspects of a PHR and medication list are most valued by consumers.
Ms. Handelman noted that although she was able to obtain some data
relevant to this issue, those data are preliminary and cannot be
released in writing. The data are based on a market analysis on consumer
preferences and perceptions on health IT that was conducted on 483
Federal Employees Health Benefits Plan subscribers in five cities. The
sample included subscribers of HMOs; preferred provider organizations;
and high-deductible plans, both Blue and non-Blue. The age range
included both active employees and retirees. Preliminary findings
included the following:

-   A majority (more than 70 percent) of surveyed consumers reported
    they would probably or definitely use a PHR.

-   Carrying a "smart card" was ranked as highly desirable.

-   In descending order, the most valuable benefits were centralizing
    records in one location, being empowered with health information,
    helping take control, and coordinating information.

-   In descending order, the most valuable aspects of a PHR were a
    medical chart with summary of doctor visits and prescriptions;
    wellness information such as immunizations, personal profile, and
    claims history of payment to provider.

-   In descending order, the most trusted sources of information were
    providers supplying information and administering PHRs, insurance
    carriers, the Office of Personnel Management (OPM) and government
    agencies, and third-party vendors.

-   In descending order, the preferred ways to update and control access
    were insurance carriers providing updates and consumers controlling
    access, consumers updating and controlling access, insurers updating
    and controlling access, and consumers updating by e-mail and
    controlling access.

-   The highest-ranked online tools included checking on drug
    interactions and identifying health risks.

One participant asked if the study could be repeated, noting that
consumers may not trust findings from health plans. Others responded
that this study is not alone in its findings.

Ms. Springer commented that these data are relevant for the
recommendations and letter that the group will send out. She pointed out
that the data are helpful for validating support that PHRs will be used.

Kathleen ("Kat") Mahan thanked Ms. Handelman for collecting these data,
noting that she was looking forward to seeing the summary. She also
suggested that it would be useful to further correlate who would use the
PHR with demographics to apply it to a chronic care population target
group.

*Markle Foundation*

David Lansky, Ph.D., reported that the Markle Foundation also conducted
consumer research approximately 2 years ago, resulting in findings
similar to those reported by Ms. Handelman. For today, he presented the
results of a simple informal survey that to date includes responses from
six online drug list services. Responders included health insurance
carriers, provider organizations, and an independent IT vendor. Though
representing a small sample, he noted that this small survey could offer
a preliminary sense of the functionalities being offered by these online
services, consumer preferences, and ways in which information is being
authenticated. An overview of the key findings included:

-   There was no uniform source from which data were being provided:
    data came from pharmacies, claims, and other sources.

-   Two of the provider organizations permit online drug refill
    services; the insurers do not.

-   More comprehensive services were offered under the rubric of a
    research approach; the generic version had less functionality.

-   The minimum functionality is to list medications. The independent
    health information technology (HIT) vendor has the most complete and
    robust information (e.g., drug interactions, drug reminders).

-   Only a minority of services allow consumers to add their own
    information.

-   Not much operability was found regarding the exporting of
    information; most had a printing option only.

-   Evaluation of consumer use has been anecdotal only; consumer
    feedback e-mails find that prescription refill is much appreciated.

-   For authentication, most services required a user name and password
    to log on. The consumer registers online, is mailed a password, and
    then goes back online to verify that the right person is accessing
    the account.

Dr. Lansky stated that authentication is a big issue regarding which he
hopes the Community will help achieve a more uniform process. Generally
speaking, there are a number of different people offering products, with
much variability. There is a low level of functionality in terms of the
AHIC Consumer Empowerment Workgroup's interests. Appreciation is
anecdotal. There is a great deal of interest in medication management.

Robert Tennant asked why the research rubric offered a more
sophisticated product. Ms. Mahan commented that providers often are
offered varying configurations that may be introduced in a phased
approach. Many choose to provide drug to drug checking, leaving it up to
the clinic to decide what else to include. Mr. Tennant added that there
are issues of export limitations. The technology is not complicated but
there is a market barrier to keep people from switching, similar to the
way cell phone numbers previously could not be carried over from one
phone service provider to another. Josh Lemieux responded that it is not
very common to see consumers move from one PHR vendor to another, due to
the lack of standardization or interoperability. He also stated that
there are no incentives to provide the transfer of consumer information
to a health care institution. Robert Kolodner, M.D. commented that if a
market is created for EHRs to have connectivity for PHRs as the mature
standard for moving information, PHR vendors will supply the service.
Ms. Handelman added that she believes PHR products should be portable,
and the Blues are working to move in that direction.

**6. Presentation of Preliminary Proposed Recommendations by Consumer
Empowerment Subgroup Representatives**

Ms. Springer asked each subgroup to present their proposed
recommendations. Time was set aside for questions and comments at the
end of each subgroup presentation.

*Interoperability Subgroup* -- Ross Martin, M.D. and Ms. Mahan

Ms. Mahan stated that the focus of these recommendations is on
interoperability challenges and developing a set of standards to address
those challenges. The subgroup felt that it was not the charge of this
group to set standards but rather to focus on the functionality of
existing standards. She referred participants to Appendix A, which
provides additional guidance on what the minimum set of standards should
include regarding registration, portability/interoperability,
information sharing with external sources, data quality, and patient
recourse. She added that the model of the Credit Bureau could be one way
for patients to seek recourse if information is inaccurately
represented.

Dr. Martin added that the work of this subgroup is a process, and that
Katy Barr, Kathleen Fyffe, and Kelly Cronin have done an amazing job to
consolidate that process into specific recommendations. These
recommendations represent one slice of a very large pool of information
that could have gone several ways; as such, Dr. Martin is more
interested in hearing comments on the prioritization of points. The
subgroup held divergent views on some issues, and Dr. Martin asks the
group to look especially at Recommendation 1.3 to reach consensus.

After this overview, participants were asked to comment on each
recommendation.

> ***Recommendation 1.0:*** The Health Information Technology Standards
> Panel (HITSP) should be charged with addressing the initial set of
> technical standards challenges in support of the consumer empowerment
> breakthrough through the delivery of initial standards. In doing this
> work, HITSP should review and consult with ongoing industry efforts to
> develop PHR standards.
>
> Specifically, the Community recommends that HITSP's work on the
> technical standards aspects of the consumer empowerment breakthrough
> continue in accordance with the scope and principles developed through
> the work of the Community and the Workgroup. HITSP's detailed
> specifications and related work products should include the following:

-   Specifications for a core registration dataset

-   Specifications for medication history

-   Specifications for identifying vocabularies and code sets that will
    ensure semantic interoperability of exchanged information

-   Messaging, authentication, and security standards

-   Development of a process for the continuing expansion of the PHR
    exchange standards and functional specifications beyond this initial
    breakthrough

-   Appropriate documentation in support of the above work products.
    (Please refer to the attachment at Appendix A: Workgroup Members'
    Background Research and the American Health Information Management
    Association).

**Discussion**

Several participants commented on the appropriateness of HITSP as the
body to develop an initial set of standards. Ms. Cronin commented that
this topic had been discussed at previous Consumer Empowerment meetings,
and that consensus was reached that HITSP is the right group. Ms.
Handelman noted that the role of HITSP is to harmonize standards and
identify gaps, and they are not the ones to identify what standards
should be used. She and others at BCBS felt that identifying standards
would be beyond HITSP's scope. Dr. Kolodner stated that HITSP can point
out differences between what the minimum elements are in individual
providers' existing standards. Dr. Martin added that HITSP is not the
body to say what the standard is, but they can point to other groups
that can; in this way, HITSP can provide "implementation guidance" on
breakthroughs.

Gail McGrath asked why this group should look to HITSP if it is not a
standardizing body. Ms. Mahan replied that each standards developing
organization develops its own set of standards; for example, Health
Level 7 (HL7) is one such body. HITSP plays a harmonizing role, so they
could look at HL7's standards and determine if the minimum requirements
are met within HL7's own set of standards. Dr. Martin added that there
cannot be just one set of standards; because there are so many layers,
they can't pick one standardization for all bodies.

Another participant summed up the discussion with the suggestion that
the subgroup take another pass at this recommendation to make sure the
language does not get blurred in the condensing process.

> ***Recommendation 1.1:*** The Department of Health and Human Services
> (HHS) should perform a market analysis with the goal of
> comprehensively describing to the AHIC the various functions and
> features of PHRs as well as the policies and business practices of
> existing vendors, sponsors, and other stakeholders regarding PHRs and
> related technologies. This market analysis should include an
> environmental scan to understand the potential value of and unmet
> demand for PHRs across populations and an analysis of the privacy and
> security policies of PHR providers that takes into account the
> intermediary networks', application sponsors', and data suppliers'
> policies and practices.
>
> Based on this analysis, the Workgroup will continue to develop
> recommendations, which may address:

-   Education and incentives for providers to accept the uniform
    registration summary and medication history data set from all
    patients

-   Education and incentives for patients to create, maintain, and allow
    providers to access their uniform registration summary and
    medication history data set (this would include alternate mechanisms
    for accepting PHR derived printouts of the registration summary and
    medication history as an acceptable substitute for the traditional
    "clipboard")

-   Development of a standardized minimum data set by PHR sponsors

-   Development of uniform user templates (e.g., for school clinics, for
    camps) for presenting registration data in electronic or printed
    form for patient-directed secondary uses of the data contained
    within the PHR

-   Development of mechanisms for allowing consumers continued access to
    established PHR services -- even if the initial relationship with a
    PHR sponsor has changed.

**Discussion**

There were no further comments on Recommendation 1.1.

> ***Recommendation 1.2:*** HHS should determine the right balance
> between enforcement of the privacy policies of PHR providers and the
> certification of privacy and security requirements for PHRs and how
> together they can help protect consumers' interests. In order to
> inform this determination, HHS should develop a white paper in
> consultation with the Federal Trade Commission (FTC) and the American
> Health Lawyers Association (AHLA) to summarize the State and Federal
> statutes that authorize enforcement of PHR providers' privacy policies
> and identify potential gaps in coverage and opportunities for use of
> the current statutes.

**Discussion**

Ms. Cronin explained that Recommendation 1.2 combines issues of
interoperability and privacy/policy issues. She noted that the FTC
(Federal Trade Commission) has authority over private entities, such as
a PHR privacy policy. Mr. Tennant pointed out that the recommendation
names specific organizations, and he wondered if that was a good idea.
Ms. Cronin replied that AHLA (American Health Lawyers Association) was
included because a subgroup member knew the organization was interested
in this topic. She further stated that it is desirable to call out
specific organizations because the goal of the Workgroup is to get work
accomplished. Lorraine Doo commented that names were taken out in some
sections and that the recommendations should be consistent.

A representative from the American Medical Association (AMA) asked how
this works in relation to the privacy and security contract work at the
ONC. Jody Daniel replied that this recommendation targets a group of
PHRs not addressed by HIPAA. It explores what other mechanisms can be
employed, such as having the FTC act as an enforcement against an entity
that has a privacy policy posted on its Web site but does not act in
accordance with it. She added that it is possible that the privacy and
security contract might produce a mechanism that could be applied to all
groups, but that this workgroup should not rely on that assumption.

> ***Recommendation 1.3:*** The Certification Commission for HIT should
> ensure that requirements for EHR-PHR data exchange are incorporated in
> the certification criteria and process for ambulatory and inpatient
> EHRs. Standards development organizations, such as HL7, should
> coordinate with the HITSP to develop a roadmap for the development of
> a basic PHR functional model and conformance criteria to enable the
> accelerated development of minimum set of criteria and a process for
> PHR certification.

**Discussion**

Mr. Tennant commented that the order of data exchange from EHR to PHR
should be rearranged and that criteria cannot be added until standards
are in place. Ms. Cronin replied that the subgroup had discussed the
order of data exchange and felt EHR to PHR was more feasible as a
short-term goal. Ms. Cronin further explained that HL7 does include
something on criteria, but the market is not completely ready for a
minimum floor of functionality for PHRs.

Dr. Lansky remarked that he does not support the second part of this
recommendation. He felt the organizations named are not appropriate for
developing a roadmap and that the recommendation is premature when there
is little agreement on even a minimum level. He further stated that a
roadmap would be an intrusion for the marketplace.

Another group member agreed that the private sector should be
responsible for the development of a product but suggested it is the
role of the Federal Government to say what the minimum standards should
be. Dr. Lansky replied that the government can determine only what the
standards are for a product it is procuring. Dr. Martin suggested that
the roadmap would be a process roadmap rather than one that determines
which features should be included over others.

Dr. Martin also stated that this roadmap would build consumer
expectations and that a basic PHR functional model needs to be nailed
down so that consumers know what they are getting. He argued that an
agreement needs to be reached on the concept of what can be expected as
a minimum package and what features are more "bleeding-edge," noting
that it is better to do this now rather than later.

> ***Recommendation 1.4:*** Industry should establish benchmarks for
> ensuring timely responses to consumer requests for various types of
> data. These benchmarks should focus on optimizing consumer access to
> their personal health information.

**Discussion**

Dr. Lansky commented that the recommendation needs to clarify that the
term "industry" in this context includes the vendor community.

Mr. Tennant commented that the recommendation does not specify time
frames but that the text of the letter states "within several hours." He
suggested that this should be changed to "a reasonable time." Another
group member suggested a benchmark is not needed to establish a timely
response because market forces would drive this. Ms. Cronin clarified
that this recommendation for establishing a benchmark came up in the
context of Workgroup discussions. Ms. McGrath added that timeliness gets
to issue of how PHRs will be populated; that is, if consumers are not
able to get their information on a timely basis, they will not
participate and PHRs will go by the wayside. She added that HIPAA
specifies a time period in which people have right to obtain their
information.

Dr. Kolodner stated that timeliness is not the issue, but that there is
a principle: humanness. He explained that the Department of Veterans
Affairs (VA) chooses to build in a delay between uploading information
to a PHR from the EHR, so that the provider can reach a patient before
the patient learns of a diagnosis on his PHR. The issue is more about
the care of the patient than the timeliness of responding to a request
for information. Ms. Mahan agreed that humaneness is important but
maintained that timeliness of response is also important and that a lack
of response is not acceptable. She suggested timeliness could be
included in high-level standards that a vendor should state upfront in
the registration process. A participant commented that the Workgroup is
not here to lay out what the benchmarks should be but that there should
be a benchmark.

Charles Safran, M.D. suggested that adding a time delay is tethering
information to providers and that there may be groups of consumers who
do not want their information tethered. Steve Shihadeh agreed, stating
that tethering information will stifle innovation in the marketplace.
Ms. Springer suggested the subgroup take another look at this issue.

> ***Recommendation 1.5:*** HHS should work with the Centers for
> Medicate & Medicaid Services (CMS), the Agency for Healthcare Research
> and Quality (AHRQ), and other interested Federal agencies to pilot PHR
> programs that measure and demonstrate the value of an electronic
> registration summary and medication history to patients with chronic
> disease. These programs should strive to meet all the objectives and
> relevant recommendations identified by the Workgroup, and an
> evaluation of the results should be reported to the AHIC by December
> 30, 2007.

**Discussion**

Mr. Tennant suggested adding "other appropriate private sector
organizations" to those mentioned in the recommendation. He also
commented on the sentence in the letter to the Secretary about creating
"measurable value" for consumers and felt that this term needed to be
clarified.

Dr. Martin noted that in the letter to the Secretary, the pediatric
population is mentioned in a paragraph before this recommendation, but
here the recommendation is limited to patients with chronic disease. Mr.
Tennant expressed concerns with using the pediatric population as an
example, especially for the breakthrough pilot. Another participant
agreed, stating that HIPAA specifically carves out the pediatric
population and that focusing on the Medicare population would make more
sense. Ms. Cronin urged participants not to be too quick to rule out the
pediatric subpopulation from the chronic illness population.

Ms. McGrath suggested that testing the recommendations should be
included as part of the pilot project.

*Policy Subgroup* -- Ms. Doo and Dr. Lansky

Ms. Doo began by saying that this group was charged with looking at
policies on privacy and security. HIPAA will cover some PHR providers,
but many are not covered under this legislation. The first
recommendation is for the creation of an ad hoc policy workgroup to
formulate the policy questions regarding personal health information.
The second recommends the formation of another advisory body, separate
from the ONC, to review what policies already exist that could be
applied to PHRs and to develop new policies where needed. She noted the
serious implications for privacy and security policies and that the
adoption of PHRs would loose momentum if the public loses trust. The
subgroup outlined the significance of public trust in Appendix B.

Dr. Lansky added that the staff made changes to these recommendations
that he does not support: specifically, the attributes associated with a
longer-term body should be applied to the shorter-term body. Ms. Cronin
replied that she will make sure that the recommendation adequately
reflects the subgroup process, and she encouraged the participants to
think realistically about what can be accomplished over the next 4--5
months. The ad hoc group could craft what needed to be done, and then a
sustainable entity would take it over for the long haul. Ms. Daniel
added that the ad hoc group would identify, at a detailed level, issues
that need policy resolution, so that the long-term group "hits the
ground running."

> ***Recommendation 2.0:*** AHIC should create an ad hoc policy
> workgroup comprised of representatives from each existing workgroup
> and charge it with framing the issues surrounding patient
> identification, linkage to patient information, authentication, and
> authorization in the context of each breakthrough by specifying
> detailed questions that will guide policy development. By definition,
> this ad hoc workgroup would be short lived and would focus on
> identifying detailed questions that would be deferred to an
> independent, sustainable policy and security advisory body. 
>
> The consumer empowerment workgroup suggested that the new ad hoc
> workgroup should consider crafting thoughtful questions surrounding:

-   Requirements for authenticating individual consumer users

-   Patient notification and consent

-   Requirements for data management and consolidation (e.g., multiple
    prescription data records)

-   Standards for patient-sourced data

-   Requirements to propagate patient-entered data back to data
    suppliers (e.g., errors, changes in meds use)

-   Methods for allowing consumers to permit and control access by
    others such as providers and caregivers

-   Policies for secondary uses of patient-supplied data

-   Policies for breaches of private health information.

**Discussion**

Dr. Martin questioned why the second-to-last bullet point specifies
patient-supplied data from other sources. He felt that there should be
policies for all secondary uses. Dr. Lansky replied that most data are
coming from HIPAA-covered entities, but data coming from the consumer
would not be covered by HIPAA. He agreed that this point should be
rewritten for clarity.

> ***Recommendation 2.1:*** By September 30, 2006, HHS should support
> the establishment of an independent advisory body on privacy and
> security policies to develop and recommend market and government
> (State and Federal) privacy and security policies to support health
> information exchange. This proposal should include concrete steps to
> be implemented no later than July 1, 2007.
>
> This advisory body should:

-   Be open, public, and transparent

-   Include both technical and policy expertise

-   Include members from each AHIC workgroup

-   Include representatives of all affected stakeholders

-   Be limited to a finite set of policy tasks and a predetermined
    schedule (to avoid "scope creep")

-   Be supported with adequate staffing or consulting resources to give
    issues proper research and attention

-   Seek consensus recommendations that are considered workable by all
    stakeholders.

**Discussion**

Dr. Martin agreed with Dr. Lansky's previous comments regarding the
charges to the longer term versus shorter term groups. Additionally, he
asked if the group has defined ownership of the PHR information. Dr.
Safran alerted participants about an upcoming meeting on this issue of
ownership. He speculated that patient advocates at this meeting would
state that patients own their own data and that policy should stem from
that perspective. Ms. Daniel reminded the participants that HIPAA
purposively stayed away from this complicated issue. Mr. Tennant
suggested reframing the issue from ownership of the information to who
has the right to release it: if the provider has a copy and the patient
has copy, then who controls when it can be shared? Ms. Daniel agreed
that it may be a more fruitful discussion to focus on control of the
flow of information and rights over that flow. Dr. Safran commented that
ownership is already "out of the bag" because commerce for buying and
selling information is already occurring. Dr. Kolodner added that
consumers might choose to pay for their information not to be released
or they might choose to be paid for releasing it. Ms. Springer asked how
this discussion can be tied back in to the group's deliverable; i.e.,
the letter to the Secretary. Dr. Martin suggested adding the question of
ownership to the policy issues listed in the recommendation.

Dr. Kolodner added that the Workgroup may want to make more explicit
ties among the subgroup recommendations. The participants agreed that
this was a good general suggestion.

*Education Subgroup --* Mr. Tennant

Mr. Tennant opened his presentation by thanking the subgroup members and
staff for all of their hard work. This subgroup focused on potential
education requirements and needs. They called on outside groups, such as
the American Cancer Society, to reach out to their own patient
populations to describe how the use of a PHR would be beneficial to
their particular concerns. Mr. Tennant remarked that educational
campaigns should focus on providers as well as patients, because
providers will use PHRs for better patient care and will populate the
data. He also recommended selecting target populations for a pilot in a
closed system, such as the HRSA community health centers, because using
an integrated delivery system for the pilot would cause "less angst."

Additional wording changes were suggested to the recommendations,
including adding public as well as private organizations to those
conducting outreach campaigns, and changing the wording regarding
leveraging State relationships. Concern was expressed regarding the
mention of proprietary products like *Follow Me* in the text of the
letter. Mr. Tennant ended his presentation by stating that the success
of whole breakthrough project hinges on how well the patients and
providers are educated regarding the use and benefits of PHRs.

> ***Recommendation 3.0:*** In the near term, work with appropriate
> private sector organizations to establish consumer awareness
> initiatives for selected target populations to promote participation
> in a breakthrough project with the goal of promoting the benefits of
> medication lists and registration summary. Examples of private-sector
> organizations may include the AARP, the American Heart Association,
> the National Health Council, AMA, medical specialty societies, and
> other voluntary health organizations.

**Discussion**

Dr. Lansky commented that this recommendation seems generic, and he
questioned whether establishing an education initiative distracts from
the priorities of developing a breakthrough product. Mr. Tennant replied
that the subgroups did put together more specific details on how to
target the various groups but that those details were ultimately blended
into a broader, more general recommendation. He explained that outreach
will touch on the issues of privacy and that the benefit of an
educational initiative is that it will prevent backlash. He reminded
participants of the finding from the Blues survey indicating that more
than 70 percent of respondents said they would use a PHR, but actual
usage is very low. He commented that education is the key for getting
over the hurdles of having a breakthrough product used.

Ms. Springer added that Recommendation 1.5 starts with a target
population, and she suggested the education initiative target the same
group to add specificity. Dr. Martin agreed with the suggestion to
coordinate Recommendations 1.5 and 3.0. He also urged consistency so
that the recommendations are not "HHS centric" or naming only private
organizations.

> ***Recommendation 3.1:*** In the longer term, provide incentives to
> private-sector organizations such as patient advocates, chronic
> disease advocates, and provider associations committed to normalizing
> the practice of PHRs as a new standard of care through culturally
> sensitive community-based activities and public action models that
> educate people about the benefits of such records and engage early
> adopters in coordinated activities that catalyze the desired social
> and behavioral outcomes of widespread acceptance and adoption of PHRs.
> Private-sector organizations may include examples such as the AARP,
> the American Heart Association, the National Health Council, AMA,
> medical specialty societies, and other voluntary health organizations.

**Discussion**

Several members commented on the wording of this recommendation. Dr.
Tennant commented that "standards of practice" will raise red flags for
physicians. Dr. Kolodner also disagreed with the wording of "normalizing
the practice of PHRs," stating that the PHR is disruptive to current
practices. He urged the group not to become provider centric in these
recommendations.

> ***Recommendation 3.2:*** HHS should identify and prioritize the
> activities of its organizations to perform research on ways to educate
> consumers, fund pilot studies for consumer education, and leverage its
> existing state relationships to promote consumer awareness of the
> benefits of HIT tools with a particular short-term focus on the value
> of an electronic registration summary and medication history. In
> particular, the communication and outreach HIT-related initiatives of
> AHRQ, HRSA, SAMHSA, and CMS should be coordinated through ONC.

**Discussion**

Ms. Cronin replied to Mr. Tennant's concern regarding naming proprietary
products; she will review that section to capture what was learned from
an example of PHRs for migrant workers, without identifying the product.
Given his concerns about the education initiative, Dr. Lansky was asked
about this recommendation for research. Dr. Lansky replied that he
thought this recommendation was strong and relevant and that evidence
should be compiled. Susan Christensen added that AHRQ is convening a
group to develop questions for their CAHP (Consumer Assessment of Health
Plans) survey on what consumers know about using HIT as part of their
care. The group will be convened in June, and then the questions will be
pilot tested.

A participant asked if this recommendation would be creating additional
bureaucracy. Ms. Cronin replied that the connections between the
agencies are already in place and that this recommendation will ensure
that the coordination occurs for the more technical pilot activity.

Ms. Doo clarified that the CMS pilot program mentioned in the letter is
not yet a firm plan and that it should not be cited. Ms. Cronin will
make the appropriate changes.

Dr. Martin ended the discussion by encouraging the participants to keep
their focus always by asking, "Is what we're doing helping consumer
empowerment?" He added that any recommendation that comes from this
group should "have 'consumer empowerment' written all over it."

**7. Next Steps, Assignments, and Timeline for Developing**

**Recommendations to the Community by May 8**

Ms. Springer again thanked the group for their participation. The charge
for the group now is to take these comments and review the
recommendations, making modifications as appropriate. She outlined four
next steps:

1.  Formulate a revised draft letter to the Secretary by the end of this
    week.

2.  Adopt the redrafted letter at the next Workgroup meeting on May 1.

3.  Finalize any changes to the letter from discussion at the Workgroup
    meeting.

4.  Prepare a presentation and slides for the next Community meeting.

Staff will coordinate the revision of the letter and recommendations and
reviewed the process for submitting comments to them.

**8. Public Input**

Mr. Jim Acklin expressed his view that the notion of a pilot needs more
definition, specifically about what the pilot will accomplish. He
suggested reviewing this notion from the perspective of consumer
empowerment, which may require the group to review what consumers'
requirements are for this system.

**9. Adjournment**

In closing, Ms. Springer thanked the leaders of the subgroups, and
recognized that much work was accomplished in a short period of time to
have the recommendations ready for discussion. She believes the group
will have a good product to present to the AHIC and to the Secretary.

The meeting was adjourned at 3:25 p.m.

**[Workgroup on Consumer Empowerment Members and Designees Participating
in Web Conference]{.underline}**

Gail McGrath (for Nancy Davenport-Ennis) National Patient Advocate

Co-chair Foundation

Linda Springer OPM

Co-chair

Kelly Cronin ONC/HHS

Staff Co-chair

Lorraine Doo CMS

Mark Gingrich (for David McLean) RxHub

Justine Handelman (for Scott Serota) Blue Cross Blue Shield

Robert Kolodner, M.D. Veteran's Administration

David Lansky, Ph.D. Markle Foundation

Kathleen ("Kat") Mahan SureScripts

Ross Martin, M.D. Pfizer

Susan McAndrew, J.D. HHS

Joseph Martinez (for Davette Murray) Tri-Service Infrastructure
Management Program Office

Charles Safran , M.D. Harvard Medical School

Steve Shihadeh Microsoft

Robert Tennant Medical Group Management Association