#  American Health Information Community

**Workgroup on Biosurveillance**

Summary of Webconference Held February 2, 2006

**[Introduction]{.underline}**

1.  **Call to Order:** Co-chair Julie Gerberding, Centers for Disease
    Control and Prevention (CDC), opened the meeting shortly after 1
    p.m.

2.  **Remarks** **by the U.S. Department of Health and Human Services
    (DHHS) Secretary:** Secretary Leavitt thanked workgroup members for
    their willingness to serve. He noted he was leaving shortly for a
    summit on pandemics -- one reason biosurveillance is so important
    and why there is an urgent need for the workgroup to complete its
    tasks this year.

3.  **Procedures:** Members were briefed on conference call procedures.

**[Review of the Workgroup's Charges]{.underline}**

-   **Broad Charge** -- Make recommendations to the Community to
    implement the informational tools and business operation to support
    real-time nationwide public health event monitoring and rapid
    response management across public health and care delivery
    communities and other authorized government agencies.

-   **Specific Charge** -- Make recommendations to the Community so that
    within 1 year, essential ambulatory care and emergency department
    visit, utilization, and lab result data from electronically enabled
    health care delivery and pubic health systems can be transmitted in
    standardized and anonymized format to authorized public health
    agencies within 24 hours.

**[Presentation]{.underline}**

John Loonsk reviewed his briefing on biosurveillance given to the
American Health Information Community (AHIC) prior to formation of the
work group.

**Highlights:**

-   Health information technology (IT) has a number of potential
    benefits for public health, not just for surveillance; i.e., to
    provide prevention-focused personal health records and clinical
    decision support tools as well as population-wide chronic disease
    management and population-level quality monitoring.

-   Public health surveillance is more than initial detection of an
    event; it also detects additional cases, monitors spread, estimates
    burden and impact, prioritizes resources, adds to our understanding
    of natural history of disease, provides a base for epidemiologic
    research, and aids evaluation of interventions and public policy.

-   AHIC has not defined the term "biosurveillance." AHIC discussion
    ranged as to whether it constitutes all of public health
    surveillance or focuses more exclusively on emergency health events.

-   AHIC agreed that IT is important both for routine surveillance
    activities and emergencies and that separate infrastructure should
    not be developed for each. AHIC agreed that potential sources of
    information include clinical care, labs, coroners, and a variety of
    other sources.

-   A wide range of relevant activities are already underway at all
    levels of government and in the private sector, including, for
    example, by State health organizations, the CDC, the Department of
    Homeland Security, and cities. Other interested parties range from
    hospitals and clinics to academia and the Department of Defense
    (DOD), as well as the pharmaceutical industry and vendors.

-   Key stakeholders include first the public, then local, State, and
    Federal public health agencies and care providers. Others include
    law enforcement and the broader preparedness community, academic
    researchers, and those who pay for health care.

-   Major needs include standardized reporting of clinical care data to
    public health -- a major component of the workgroup charge -- and to
    facilitate real-time data reporting; address gaps in detection and
    response; support innovative programs for specific goals; and
    explore/expand/evaluate new information sources, data, and reporting
    methods.

-   Other major needs include to ensure patient privacy and
    confidentiality, identify and share best practices; improve variable
    State and local health IT capacity; and increase coordination of
    State, local, and Federal health authorities' surveillance
    activities.

-   In conclusion, although a number of relevant activities are
    underway, AHIC wants to work toward a more consistent infrastructure
    and to improve surveillance capacity nationwide while acknowledging
    the need for local investigation and response.

-   Potential implementation and acceleration opportunities include
    determining best practices, funding key leverage inputs to improve
    electronic capacity at all governmental levels, establishing
    electronic lab result reporting to State and local public health
    agencies, funding evaluation of rapid diagnostic assays to followup
    clinical syndromes, and resolving privacy issues and confusion.

-   Possible IT breakthroughs for public health include strengthening
    existing public health IT systems, promoting delivery of
    standardized health care data to public health for biosurveillance
    purposes, and building a nationwide system that collects information
    from different jurisdictions and/or clinical facilities and enables
    local and central analysis, alerts, and actions.

**[Use Cases]{.underline}**

Dr. Loonsk reviewed some of the Office of the National Coordinator's
(ONC's) work directly relevant to creating a national infrastructure for
the President's health IT agenda. Contractors are providing use cases to
help document biosurveillance issues and specific activities shortly
before or by March 7 that will articulate how to achieve breakthrough in
biosurveillance IT with, for example, standards harmonization. Key
questions need to be refined and answered, such as how to define
populations. These questions will be discussed by the workgroup later in
the meeting. ONC's and the contractors' work document will be made
available by the next meeting.

**[Additional Presentations]{.underline}**

Three presentations were given on current activities in biosurveillance
-- in New York City (NYC), North Carolina (NC), and the CDC.

***I. Syndromic Surveillance in NYC -- Thomas Frieden***

**Highlights:**

-   Data sources are emergency department (ED) visits, ambulance calls,
    over-the-counter and prescription drug sales, school health visits,
    and worker absences.

-   Hypothetical correlations can be made between, for example, excess
    visits to EDs and more general population impact.

-   Using SatScan, whole neighborhoods can be examined for clusters of
    illness, assisting investigation and followup.

-   The system has been useful for detection of annual citywide
    outbreaks of norovirus, rotavirus, influenza, and asthma, assisting
    in age-specific influenza morbidity surveillance and detection of a
    citywide increase in diarrhea and local respiratory signals after
    the August 2003 blackout.

-   The system also has provided reassurance during "scares," such as
    SARS in 2003 and anthrax in 2001, and also helps monitor
    noncommunicable trends, such as in cigarette sales, which assists
    tobacco control programs.

-   Program costs are modest -- less than \$500,000 a year, accounting
    for about 60,000 health events per day.

-   By July 1, all labs reporting to the system must report
    electronically, but this goal is challenging, in part due to
    different testing methods, different cutoff levels, and different
    information systems. In short, lab surveillance is critical but
    difficult, and evaluation is key.

-   The system has proven to be a good model for human influenza,
    providing some quantitative, demographic, and distribution
    information. Tracking animal-borne diseases has proven more
    challenging, so NYC now mandates reporting of veterinary diseases
    and is working toward veterinary lab reporting as well.

***II. North Carolina Disease Event Tracking and Epidemiologic
Collection Tool (NC DETECT) -- Leah Devlin***

**Highlights:**

-   NC DETECT is used for early event detection of suspicious patterns,
    such as bioterrorism, using CDC's Early Aberration Reporting System
    software.

-   NC DETECT is used for broader public health surveillance, such as
    infectious disease trends, disaster aftermaths, and injury and
    occupational health.

-   For early detection, NC DETECT takes data primarily from five
    sources -- preadmission information, including all emergency medical
    services, veterinary lab data, hospital EDs (all 113 in North
    Carolina with 24-hour EDs, downloading to the system every 12
    hours), poison control center data, and wildlife center data (on a
    pilot project basis).

-   Immunization registry data, lab results, and physician-reported
    cases are also used.

-   State law requires certain ED data elements to be reported to the
    system as well as preadmission hospital data, down to the zip code
    level. Access is highly controlled.

-   New this year is Ingest, a hospital-based ED data system. The 113
    hospitals will report to it fully by April, incentivized by grants
    from CDC Federal preparedness funds (a total of \$3.5 million over 5
    years).

-   Plans for technical improvement include system redesign for improved
    performance and ease of use, expanded syndrome development and
    evaluation under a Response to Intervention/University of North
    Carolina (UNC) BioSense grant, and incorporation of standardized
    chief complaints through a UNC-developed Emergency Medical Text
    Processor.

-   Importantly, NC DETECT was built in partnership with the private
    sector, primarily the North Carolina Hospital Association, as well
    as the State legislature and academia.

-   Like NYC, NC DETECT has found it challenging to get and use
    laboratory data.

***III. Recent developments in the use of BioSense for early event
detection and situational awareness, emphasizing the latter -- M. Barry
Rhodes***

**Highlights:**

-   Situational awareness (BioSense RT \[real-time\]) is an aspect of
    biosurveillance that deals with what happens after an event is
    either suspected or confirmed. Questions posed include: Is something
    really happening? Where is it? How big is it? Is it spreading? Is
    our response working? And, importantly, is it over?

-   Situational awareness needs to exist at all governmental levels.

-   The BioSense approach, to date, has been to facilitate nearly
    real-time delivery of aggregated emergency room (ER) and acute care
    data from hospitals to BioSense and local public health officials
    every 15 minutes.

-   Electronic "views," analytics, and reports can be provided to local,
    State, and national public health, hospital, and government
    officials through a secure Web site.

-   Target data sources and types include hospital resource and
    utilization data, patient demographics (with obvious identifiers
    removed), diagnostic procedure codes, chief complaints, discharge
    disposition, orders for lab work, radiology, pharmaceutical items,
    and ultimately lab results.

-   The BioSense staff has just completed the first phase of hospital
    recruitment -- primarily large metropolitan hospitals or hospitals
    in metropolitan areas with high-volume EDs. Health systems with
    multiple hospitals permit tapping into a single IT source.
    Timeliness of data and good communications with support from local
    public health are goals.

-   Implementation concepts are to coordinate with local and State
    public health for early event detection situations, awareness, and
    outbreak characterization; to use industry-accepted Public Health
    Information Network Standards for coding and transmission of data;
    to provide funding for incremental costs of hospital/health system
    participation; and to be able to split data to be sent directly to
    both the CDC and local public health departments.

-   BioSense has been working on the early event detection system
    since 2003. BioSense RT currently is receiving data from 10 cities
    represented by nine hospital systems (32 hospitals total). The 2006
    goal is to add a minimum of 21 additional cities and 350 hospitals,
    primarily for enhanced pandemic flu preparedness.

**[Presentations Discussion Highlights]{.underline}**

-   Surveillance from small and medium private practices might be
    aggregated as Regional Health Information Organizations get underway
    to provide clinical data access services to authorized users across
    defined populations. It is unlikely, however, that standardized
    reporting will be possible in the near term.

-   Two-way communication is beneficial, and that type of system exists
    for monitoring ambulance diversion and ED status for about 50
    percent of the country.

-   Standards will facilitate two-way communication.

-   Clarity is needed on data elements to capture nationwide.

-   In response to questions of how different systems will be integrated
    with BioSense and whether expansion of BioSense is the workgroup's
    ultimate work product, Rhodes stated that the group's goals and the
    objectives of BioSense are in alignment.

-   BioSense is looking to large major laboratories, such as Lab Corp.,
    Mayo, and Quest, as well as poison control centers for data.
    Standards and more well-defined datasets will help.

-   Claims clearing houses connected with ambulatory care billing
    systems and labs might prove valuable sources of data and data
    aggregators.

**[Definition of Deliverables for March AHIC Meeting]{.underline}**

**Deliverables:**

-   A 1- to 2-page document that defines functional business
    outcomes/goals (e.g., Project Charter)

-   Refined timeline

-   Recommendations for AHIC (how to overcome big barriers for
    implementation)

**Discussion Highlights:**

-   A form for surveying other biosurveillance activities underway
    across the country is being drafted and will be provided to members
    shortly.

-   Over the next few weeks, in preparation for March 7, a short
    document (2 pages) will be developed describing functional goals for
    the biosurveillance project and providing an updated timeline and
    recommendations to AHIC for overcoming major implementation
    barriers.

**[Discussion Re: Questions Identified in the January 30 Biosurveillance
Briefing Document]{.underline}**

**A. [Modeling the Project:]{.underline}**

**Question 1** --What biosurveillance functions can actually be
supported with advanced, enhanced, or real-time transmission of
electronic health data?

**Comments:**

-   Functions mentioned today are event detection and situational
    awareness, but what about outbreak and response management support?
    Should other functions be considered as well?

-   Situational awareness and response management make two-way
    communication critical.

-   Functions that are not core could be added to the system over time.

    **Decision Point:** The workgroup's project and recommendations will
    address the four functions listed on page 2 of the briefing
    document. Elements need to include robust bidirectional
    communication capability.

    **Question 2** -- What are the minimum lab, ambulatory care, and ER
    data elements needed by public health?

    **Comments:**

-   A starting point to answering this question could be a crosswalk of
    the three systems presented today.

-   A short list of scenarios -- including surveillance for
    influenza-like illness or pandemic influenza -- could help answer
    the data elements question.

-   Additional data elements, such as veterinary or animal health data,
    could be added later.

    **Decision Point:** A minimum set of data elements will be used as a
    starting point, with the opportunity to add others later.

    **Question 3** -- What are the sources of these data?

    **Decision Point:** When scenarios are identified and cross walked
    to data elements, staff and members should identify data sources.

    **Question 4** -- What time delay can be tolerated between clinical
    events and their reporting?

    **Comments:**

-   NC's data comes from hospitals every 12 hours, with collapse to 15
    minutes, if needed.

-   NYC's data comes every 24 hours, with some hospitals sending it
    every 12.

-   This relates to targets. Should the group develop a nominal set?

    **Decision Point:** Twenty-four-hour acquisition is an acceptable
    initial goal, recognizing that sooner is better, as is flexibility.

    **B.** **[Defining the Populations:]{.underline}**

    **Question 1** -- How should developing a broader net of sentinel
    sites be balanced against broad coverage in major metropolitan
    areas?

    **Comments:**

-   NYC's surveillance system is useful on a city level but not as
    useful on specific community or neighborhood levels.

-   Could we have both a broader net of sentinel sites and broad
    coverage in major metropolitan areas?

-   Local-level events require more detail than sentinel sites might be
    able to provide.

-   Comprehensive coverage should be a priority, for surveillance as
    well as a broader set of health functions.

-   Use existing systems to create a foundation.

-   A wide net will be most useful.

    **Decision Point:** A wide net is preferable.

    **C. [Other Issues:]{.underline}**

    **Question 1** -- How will patient privacy be protected while still
    supporting appropriate public health investigations?

    **Comment:**

-   NC bypasses Health Insurance Portability and Accountability Act
    (HIPAA) requirements with the allowable provision of public health
    need to know.

    **Decision Point:** Privacy is important. More information is needed
    on how State-specific privacy and security issues will shape the
    scope of the group's work. At present, HIPAA allows access for
    essential public health action.

    **Question 2** -- How do we address varying State-specific privacy
    and security issues?

    **Decision Point:** A briefing will be arranged (see Next Steps).

    **Question 3** -- How can clinical sites be encouraged to provide
    standardized data?

    **Comments:**

-   NC provided grant money to cooperating hospitals.

-   The driver in NC was State law requiring hospitals to provide the
    requested data to public health. The law does not address other
    providers.

-   BioSense has provided hospitals with funds to enhance their
    infrastructure to facilitate the feed.

-   An incentive to cooperate is getting the data back.

-   More specificity on target data is needed to answer the question at
    hand. The most useful target data might not be the data easiest to
    get.

    **Decision Point:** Economic incentives may be helpful, as well as
    information sharing. State law is a powerful incentive. More
    information is needed on ambulatory care sites.

    **Question 4** -- How will data be provided to meet biosurveillance
    needs at multiple levels -- local, State, and national?

    **Comments:**

-   Anthrax and other public health emergencies have shown the need for
    all levels of public health to have information and to be able to
    share it, cross-jurisdictionally.

-   Redundant channels of communication that complement one another are
    needed, as well as person-to-person networking.

    **Decision Point:** Further understanding of privacy, security, and
    standardization issues will help the group address cross- and
    multijurisdictional and multidisciplinary capacities.

    **Question 5** -- How will data be shared in order to support both
    routine and emergency situations?

    **Decision Point:** Further understanding of privacy, security, and
    standardization issues will help the group address cross- and
    multijurisdictional and multidisciplinary capacities.

    **[Develop Workplan: Identification of Need for Immediate
    Deliverables]{.underline}**

    **January--March 2006:**

1.  Identify existing tools and solutions that could be rapidly
    deployed, and present recommendations to the community.

2.  Identify local, State, and Federal agencies; nongovernmental
    organizations; and private entities needed to support the tools and
    solutions.

3.  Present a detailed timeline for realization of the specific charge
    to the community.

    **[Next Steps/Action Items for Staff and Workgroup]{.underline}**

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1.  Working with the CDC, identify a startup short list of scenarios,
    including pandemic influenza, and share results with workgroup
    members for their input.

2.  Crosswalk existing systems (from the three presentations given
    today) to identify case elements for the scenarios.

3.  Survey -- or find pre-existing surveys with help from the CDC and
    workgroup members for -- other programs in place across the country
    that could be built upon.

4.  Examine applicable NC State law and the State's Event Detection (ED)
    data elements by law and practice.

5.  Develop an internal workplan to prepare members for their next
    meeting, focusing on achieving the March 7 deadline for presentation
    to the community. Also clarify actions required by longer-term
    timetables and deadlines.

6.  Arrange for a presentation within 2 weeks on the current DHHS \[ONC
    Director?\] investigation of State-to-State variability in provision
    of clinical care as a starting point to examination of
    State-to-State variability in public health data management and
    security issues.

7.  At the next meeting, clarify what needs to be recommended to the
    community over the longer-term timeline.

**[Longer-term Timeline and Milestones (as presented, subject to
change)]{.underline}**

**April--June 2006:**

1.  Identify public and business policies that need to be changed or
    that are needed to meet the specific charge, and make
    recommendations to the community.

2.  Consider privacy issues that may arise from this effort, and report
    discussions to the community.

3.  Review standards architecture and certification criteria relevant to
    the realization to the goal and make recommendations to the
    community.

**July--September 2006:**

1.  Make recommendations to the community to identify deployment targets
    and models for deployment.

2.  Make recommendations to the community to develop an education and
    awareness plan.

3.  Make recommendations to the community to develop a timetable to
    transition from the specific charge to the broad charge.

**October--December 2006:**

1.  Make recommendations to the community to implement a pilot effort
    and a rollout plan that will realize the specific charge.

2.  Evaluate the year and progress toward achieving the broad charge.

**[Public Input and Response]{.underline}**

**Comment:** Alan Zelikoff of Albuquerque, NM, called in to note 4 years
of experience working with a clinician-driven system that includes
veterinarians. Key elements of its compliance success include ease of
participation and returning useful information to physicians and the
community. The system also has addressed important issues, such as:

-   Two-way communication

-   Reduction of signal noise

-   Provision of information on a need-to-know basis, tailored to
    specific needs

-   Helping public health officials define cases effectively on the fly

-   Patient confidentiality.

When clinicians report a case to the system that meets specific or broad
criteria as defined by public health officials, the system automatically
and immediately notifies public health officials. This has proved
important in early detection of disease and helping to rule out a
purported bioterrorism threat.

**Conclusion:** Consider clinician-driven surveillance systems
complementary to data mining-based surveillance systems.

**Response:** Brian Keaton noted a group of emergency physicians that
has worked on these issues called "Front Lines of Medicine."

**[Adjournment]{.underline}**

With public comment concluded, Co-chair Gerberding adjourned the meeting
at approximately 3:15 p.m.

**Disclaimer**

*\"The views expressed in written conference materials or publications
and by speakers and moderators at HHS-sponsored conferences, do not
necessarily reflect the official policies of the Department of Health
and Human Services; nor does mention of trade names, commercial
practices, or organizations imply endorsement by the U.S. Government.\"*

**[Workgroup on Biosurveillance Members]{.underline}**

**[Participating in the Webconference]{.underline}**

**Introductions/Roll Call:** Staff members and invited guests
participating in the meeting introduced themselves, and roll call was
taken. Participants were as follows:

Julie Gerberding, CDC/DHHS

Co-chair

Mitch Roob Indiana Family and Social Services Administration

Co-chair

Karen Bell ONC/DHHS -- Staff Co-chair

Kelly Cronin ONC/DHHS -- Staff Co-chair

Workgroup Members:

Michael Barr American College of Physicians

Larry Biggio State of Wyoming

Mary Brady National Institute of Standards and Technology

Leah Devlin North Carolina Department of Health and Human Services

Thomas Frieden New York City Health Commissioner

Brian Keaton American College of Emergency Physicians

Adele Morris Office of Economic Policy, Treasury Department

LTC David Parramore DOD

Mark Rothstein National Committee on Vital and Health Statistics

Ed Sondik CDC

John Loonsk ONC/DHHS

Invited Guests:

M. Barry Rhodes CDC/DHHS