American Health Information Community

Personalized Healthcare Workgroup

DRAFT

Summary of the Third Web Conference of this Workgroup

Wednesday, February 21, 2007

PURPOSE OF MEETING

The purpose of the meeting was to receive expert testimony to inform the visioning and workplan development of the Personalized Healthcare (PHC) Workgroup. The meeting began at 1:05 p.m.

KEY TOPICS

1. Summary of the January 4, 2007, Meeting

No objections to the acceptance of the summary were heard, and the summary was therefore accepted as drafted and circulated.

2. Health Information Technology Standards Panel (HITSP)

John Halamka, Chair of HITSP, described the panel’s structure, governance, and process, and its relationship to the Workgroup. (The presentation is available online at www.hhs.gov/healthit/ahic/healthcare/phc_materials.html.) HITSP takes its direction from the Community, which defines the use cases for which HITSP attempts to harmonize standards. Dr. Halamka suggested that the Workgroup recommend a use case to the Community. The electronic health record (EHR) laboratory case provides a useful example.

Technical interoperability is required, semantic interoperability is what the panel is attempting to achieve, and process interoperability is a long-term goal.

3. Standards for Family History Information

Kevin Hughes of the Avon Comprehensive Breast Evaluation Center described his experience with the collection and use of standards for family history information. (The presentation is available online at www.hhs.gov/healthit/ahic/healthcare/phc_materials.html.) By using data that patients input into My Family Health Portrait, Health Level Seven (HL7) standards can be applied to translate data for risk analysis and pedigree drawing software.

Although a complicated family background and lack of patient information on family background may constitute challenges to the collection of accurate and complete information, having the patient enter information is a good starting point; data can be corrected or added later by the clinician. In response to a question about a generic family history use case, he recommended Progeny. Eventually, there will be a need to devise a way to deal with conflicting and inconsistent information, for example, between information provided by the patient and the tumor registry data.

If HL7 is approved for family history information and becomes part of the certification process for EHRs, this will create pressure for other software programs to collect the same kind of information in a way that is translatable into an HL7 message and subsequently into the EHR.

4. Recommendation and Use Case Development

John Loonsk of the Office of the National Coordinator for Health Information Technology described the Community’s process for the selection and development of use cases. (The presentation is available online at www.hhs.gov/healthit/ahic/healthcare/phc_materials.html.) Use cases are selected by the Community after the consideration of recommendations made by the various workgroups. The emergency response use case has been developed and published. It addresses issues around summary record exchange.

In January 2007, the Community prioritized three cases: consumer access to clinical information, medication management, and quality. These cases are expected to be completed in April 2007, after which the following cases will be undertaken: remote monitoring, remote consultation, public health case reporting, response management, and referrals and transfer of care. Any use case recommended by the PHC Workgroup would likely be placed in the hopper with these cases.

Dr. Loonsk suggested that the Workgroup members think about a use case that builds on another case being developed. For example, as suggested by one member, the medication management case could be expanded to include genomics. Already, several of the cases under development are extension of earlier use cases.

Stages in the development of a use case include the following:

9615. The Workgroup identifies a priority.

9615. The staff outlines a prototype.

9615. Public comment is solicited.

9615. The staff develops a detailed use case.

9615. Public comment is solicited again.

9615. The recommendation is submitted to the Community.

Decisions made by the Community then drive HITSP and the Nationwide Health Information Network. The co-chairs asked the staff to compile and distribute a bibliography of information on use cases, as well as information of the possibilities for expanding current use cases, and a definition of and listing for enabling technologies.

Staff action item #1: Compile and distribute a description of use cases, possibilities for expanding current use cases, and a definition of and listing for enabling technologies.

5. Visioning and Workplan Development Preview

Greg Downing of the Department of Health and Human Services (DHHS) explained that each Workgroup had undertaken a visioning process prior to workplan development. He introduced Kristin Brinner, Ph.D., who described the staff work being done to guide the visioning exercise scheduled for the Workgroup meeting on March 12. She is conducting an environmental scan to complete a matrix template that organizes information into the categories of “current state,” “intermediate,” and “desired end state” (what the system will be by 2014) for PHC from the perspective of the patient, the provider, and the researcher. Health information exchange issues and resources will be identified as well. Dr. Brinner asked for volunteers to assist her in the collection of information for the current state as well as the end state. The matrix will form the basis for the visioning exercise to be conducted during the March 12 meeting in Washington, DC. It will be distributed to members in advance of the meeting.

Staff action item #2: Work with a subset of members to complete a matrix to be used for visioning during the March 12 meeting.

6. Next Steps

An all-day meeting has been scheduled for Monday, March 12, in Washington, DC. Visioning and workplan development are on the agenda. Staff will send out various materials for members to use to prepare for the meeting.

7. Public Comments

No member of the public sought to speak.

8. Adjournment

The meeting adjourned at 2:57 p.m.

SUMMARY OF RECOMMENDATIONS AND ACTION ITEMS

No recommendations were made.

Staff action item #1: Compile and distribute a description of use cases, possibilities for expanding current use cases, and a definition of and listing for enabling technologies.

Staff action item #2: Work with a subset of members to complete a matrix to be used for visioning during the March 12 meeting.

Meeting materials are available at www.hhs.gov/healthit/ahic/healthcare/phc_materials.html.

Personalized Healthcare Workgroup

Members and Designees Participating in the Web Conference

Co-chairs
John Glaser	Harvard Partners
Douglas Henley	American Academy of Family Physicians
Members
Carolyn Clancy	Agency for Healthcare Research and Quality
Beryl Crossley, B.M., B.Ch.	Quest Diagnostics
Paul Cusenza, M.B.A.	23andME
Becky Fisher, M.L.S.	Patient Advocate
Felix Frueh	Food and Drug Administration
Allan Guttmacher	National Institutes of Health/National Human Genome Research Institute
Kathy Hudson	Genetics and Public Policy Center, Hopkins
Betsy Humphreys, M.L.S.	National Institutes of Health/National Library of Medicine
Stephen Matteson	Pfizer
Deven McGraw	National Partnership for Women and Families
Amy McGuire	Baylor College of Medicine
Steve Teutsch, M.P.H.	Merck
Janet Warrington	Affymetrix
Marc S. Williams	Intermountain Health
Office of the National Coordinator
Gregory Downing
Kristen Brinner
Senior Advisors
Michele Lloyd-Puryear	DHHS/HRSA
Reed Tuckson	UnitedHealth Group
Lisa Rovin	DHHS/FDA
Others (excluding presenters)
Jean Slutsky	Agency for Healthcare Research and Quality
Campbell Gardett	DHHS
Dina Paltoo	DHHS

Disclaimer: The views expressed in written conference materials or publications and by speakers and moderators at DHHS-sponsored conferences do not necessarily reflect the official policies of the DHHS; nor does mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government.