American Health Information Community

Consumer Empowerment Workgroup

Summary of the 19th Meeting of this Workgroup

Wednesday, September 12, 2007

SUMMARY OF KEY TOPICS

1. Call to Order and Welcome

Judy Sparrow, AHIC Director, opened the Web conference at 1:07 p.m. She reminded those present that the meeting was designed to meet the requirements of the Federal Advisory Committee Act. Workgroup members then introduced themselves.

2. Opening Remarks and Acceptance of Meeting Summary

Rose Marie Robertson, co-chair, welcomed participants and provided an overview of the agenda for the meeting. She asked members to review the meeting summary from July, and a motion was passed to accept the summary. This summary and other meeting materials are available on the CE Workgroup Web site at www.hhs.gov/healthit/ahic/consumer/ce_archive.html.

3. NCVHS Update

Following the discussion at the July meeting, Simon Cohn provided an update of the National Committee on Vital and Health Statistics (NCVHS) activities related to secondary uses, or expanding purposes, of health data.

Workgroup member questions and comments included the following:

• In terms of the advantages of providing an overall framework for the various different types of secondary uses, Dr. Cohn commented that there are general principles that can be developed at a high level. When looking into a specific case, the framework provides a starting point to drill down into the details that are unique to that case. From a consumer empowerment perspective, it was noted that this framework could present the issues in a coherent way so that the consumer can make an informed choice to opt in or out.

• Dr. Cohn clarified that the diagrammatic representation of health data for quality uses is a “work in progress” to assist in thinking about quality as an issue that permeates other uses. It is not necessarily meant as a pictorial view of the overall framework.

• Responding to a question about whether the architecture of the infrastructure may become part of the policy discussion, Dr. Cohn commented that architecture may be a tool in minimizing perceived risks. Additionally, Dr. Cohn stated that policy recommendations need to be considered in terms of what requires new legislation versus what can be accomplished through the Health Insurance Portability and Accountability Act.

• Concerning the value proposition of secondary uses for consumers through personal health records (PHRs), Dr. Cohn replied that the issue becomes a question related to the definition of a PHR. Through the testimony gathered by NCVHS, it appears that PHRs, electronic health records (EHRs), and health databanks are converging, and it is becoming increasingly more difficult to distinguish between them.

Dr. Cohn closed the discussion by offering to provide a follow-up presentation after the final report is released.

4. Business Cases for PHR Use

Dr. Robertson introduced the next series of presenters by stating that the Workgroup is interested in looking at the role of PHRs to provide proven business cases that will support the widespread adoption of health information technology. These presentations are available on the Web site listed above.

PHR Key Capabilities and Value Propositions

Elaine Blechman, professor at the University of ColoradoBoulder, presented on the emerging PHR types, how these PHR models meet consumer needs, and how they add value from the perspective of different stakeholders.

Workgroup member questions and comments included the following:

• Several Workgroup members commented that they have had different experiences with the capabilities of the tethered PHR model. Dr. Blechman provided a clarification that “information view” refers to the information in the system that is available to the consumer. She stated that in tethered PHR systems, only a partial view of the record is available to consumers; the PHR will not show information that the providers and administrators have decided should not be accessible to consumers. This “information view” does not consider information that the consumer may have imported or added to the record.

• Dr. Blechman stated that in the “unbound” model, the consumer would have the most complete record, because the consumer is collecting the information and all the collected information would be presented in the PHR view. Workgroup members added that in this situation, the workload for the consumer could be reduced through automation and data pre-population, which many health plans are providing.

Karen Bell thanked Dr. Blechman and commented that looking at different types of PHR models is helpful to sort out the significant advantages to the payer, the provider, and the patient.

Proposed Reimbursement Model for Online Care

Paul Tang, Palo Alto Medical Foundation, presented a proposed model for reimbursing providers for online care, which is recognized as a major barrier to PHR adoption.

Workgroup member questions and comments included the following:

• While the population of Palo Alto may tend to be more “tech-savvy” than the average American population, Dr. Tang pointed to the adoption rate of older populations and the widespread availability of Internet access as positive trends.

• First adopters are often considered the most motivated to use new technologies. Dr. Tang commented that given adoption rates have reached 50 percent and are not “plateauing,” he does not believe that technology users represent a self-selected minority.

• Tying this model back into the business case for PHRs, Dr. Tang clarified that online consultations should be a core functionality offered by tethered PHRs. It is not only one of the most popular features for patients and providers, but also a feature that has great potential to change health outcomes and costs.

• Regarding whether Secure Messaging (SM) is a common feature for tethered PHRs, Dr. Tang replied that SM is half the benefit of having PHRs integrated with EHRs.

• Regarding whether the standards environment is adequate to support interoperability with providers that are not part of an integrated system, Dr. Tang commented that the majority of the experience to date has been with provider groups. Palo Alto is now integrating with two other EHRs used by physicians affiliated with their health system, and other large health systems are starting to move in that direction to extend their system capabilities beyond the integrated delivery system. The goal is having interoperability of EHRs and their accompanying PHRs for all providers, and the standards activities will help accomplish this goal.

Report on the My HealtheVet PHR

Kim Nazi, Department of Veterans Affairs (VA), presented on the VA’s experience with PHR development, adoption, and benefits within the context of this large health care delivery system. Due to time constraints, Workgroup member questions and comments were deferred to the next meeting.

Action Item #1: Workgroup members will continue discussing the VA experience with PHRs during the next Workgroup meeting.

5. ONC Update

Dr. Bell provided information on the following U.S. Department of Health and Human Services (HHS) Office of the National Coordinator for Healthcare Information Technology (ONC) activities:

• There are several documents out for public review, including the 2008 use cases and the Health Level Seven (HL7) PHR functional model. Donald Mon, facilitator for the HL7 PHR Workgroup, provided a brief overview of the questions on which the group is seeking comments.

• The Request for Proposals for the AHIC successor has been released, and a 2-year, $13 million contract will be awarded in November. The contractor will design a public-private partnership model and begin operation of the AHIC successor starting at the end of 2008.

• The activities of two other Workgroups dovetail with this group. The Chronic Care Workgroup is moving forward with a demonstration project on SM. The EHR Workgroup is looking at EHR adoption. It will be important to work with them on ensuring the integration of EHRs and PHRs, as well as looking at what populations will benefit the most from an integrated PHR. Workgroup members were interested in hearing more from population-based health care researchers.

Action Item #2: ONC staff will arrange for testimony from researcher Joanne Lynn and Workgroup member Myrl Weinberg for the next Workgroup meeting.

6. Recommendation Follow-Up

Dr. Bell then presented the status of 14 recommendations from the CE Workgroup to the AHIC in January 2007. Four of those recommendations were tabled, and the other 10 have been reviewed by HHS to ensure that they are consistent with what is “doable” by the Federal Government. Dr. Bell presented the changes that were made to Recommendations 2.4, 3.1, 3.2, 3.2.1, and 3.2.2, as well as the rationale behind those changes. The final versions of the recommendations will be available in a written format next week.

Workgroup questions and comments:

• Lorraine Doo asked if the Agency for Healthcare Research and Quality (AHRQ) is adopting a timeline for Recommendation 3.2, and Dr. Bell clarified that AHRQ, ONC, and the Office of the Assistant Secretary for Planning and Evaluation are working together on this project.

• Regarding Recommendation 3.2.2, Dr. Tang asked what data is available on the adoption rates. It was noted that the availability of this information is different than measuring its usage, and usage rates appear to be low.

• Ms. Doo offered to provide interim information on the Centers for Medicare & Medicaid Services (CMS) pilot PHR at the next Workgroup meeting.

Action Item #3: ONC staff will provide a written document listing the final versions of the Workgroup recommendations.

Action Item #4: Ms. Doo will provide an interim report on the CMS pilot PHR for the next Workgroup meeting.

7. Recap of Action Items from Today’s Meeting

Dr. Robertson reminded Workgroup members to take advantage of the opportunities to provide input on the use cases and the HL7 public comment period. She noted that there were a number of topics on which information will be gathered and brought forward to the next Workgroup meeting.

Dr. Robertson stated that the next meeting of the Consumer Empowerment Workgroup will be held on Tuesday, October 16, 2007, from 1 to 4 p.m., and the next AHIC meeting will be held on Tuesday, September 18.

8. Public Comments

There were no public comments.

9. Adjourn

Dr. Robertson thanked the meeting participants, and the meeting was adjourned at 3:53 p.m.

SUMMARY OF ACTION ITEMS

Action Item #1: Workgroup members will continue discussing the VA experience with PHRs during the next Workgroup meeting.

Action Item #2: ONC staff will arrange for testimony from researcher Joanne Lynn and Workgroup member Myrl Weinberg for the next Workgroup meeting.

Action Item #3: ONC staff will provide a written document listing the final versions of the Workgroup recommendations.

Action Item #4: Ms. Doo will provide an interim report on the CMS pilot PHR for the next Workgroup meeting.

MEETING MATERIALS

Agenda

Simon Cohn - Secondary Uses of Health Data

Elaine Blechman - Personal Electronic Health Records: Types, Capabilities, Consumer Needs, & Value Propositions

Paul Tang - Facilitating Online Care: A Proposed Reimbursement Model

Kim Nazi - My HealtheVet PHR

Consumer Empowerment Recommendations

Consumer Empowerment Workgroup

Members and Designees Participating in the Web Conference

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 HHS; nor does mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government.