Department of Health and Human Services
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
National Health Information Infrastructure (NHII) Workgroup
HEARINGS ON PERSONAL HEALTH RECORD (PHR)
January 5–6, 2005
The NHII Workgroup of the NCVHS was convened on January 5 and 6, 2005, at the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public.
Workgroup members present:
- John R. Lumpkin, MD, MPH, Chair (by phone)
- Jeffrey S. Blair, MBA
- Simon P. Cohn, MD
- Richard K. Harding, MD (by phone) (absent 1/6/05)
- John P. Houston, JD
- Stan M. Huff, MD
- C. Eugene Steuerle, PhD
- Kevin C. Vigilante, MD, MPH (absent 1/5/05)
NHII Staff Present:
- Mary Jo Deering, PHD, NIH, Lead Staff
- Cynthia Baur, PhD, OPH/OS
- Linda Fischetti, RN, MS, DVA
- J. Michael Fitzmaurice, PhD, AHRQ
- Kathleen Fyffe, ASPE
- Marjorie S. Greenberg, MD, Exec. Sec., NCVHS, NCHS
- Robert Kambic, ASPE
- Eduardo Ortiz, MD, MPH, DVA
- Steven J. Steindel, PhD, CDC
- Michelle Williamson, NCHS
- William A. Yasnoff, MD, PhD, OS/ASPE NHII Liaison
- Ritu Agarwal, PhD, U. of Md., Ctr. for Health Info. and Decision Systems
- Peter Basch, MD, e-Health Initiative, MedStar Health
- Cynthia Baur, PhD, Office of Disease Prevention and Health Promotion, HHS
- Robert Blais, VA patient, MyHealtheVet user
- Patricia Flatley Brennan, RN, PhD, U. of Wisc.–Madison
- George Brown, CapMed user (by phone)
- Laura J. Burke, RN, PhD, FAAN, Aurora Health Systems, Milwaukee
- Thomas Foley, Geisinger user (by phone)
- Kathleen Krantz, Greater Omaha Packing Co., Inc.
- David Lansky, PhD, Markle and Connecting for Health
- Catherine Liberles, RN, Mass. General Hosp., Partners Patient Gateway
- James Magiera, MyHealtheVet user and program mgr. Bedford, Mass.
- Philip Marshall, MD, MPH, WebMD Health.
- Bonnie Thowson (by email), Shared Care Plan PHR user
- Andrew M. Wiesenthal, MD, SM, Kaiser Permanente (by phone)
- LTC David Williams, AN, U.S. Army, Office of the Asst. Sec. of Defense
- Jackie Lee Adler, NCHS
- Bill Alfano, BlueCross BlueShield Assn.
- Carol J. Bickford, PhD, RN, BC, Amer. Nurses Assn.
- Laura Blum, MA, Joint Commn. on Accreditation of Healthcare Organizations
- Maj. Thomas C. Burzynski, U.S. Army, Office of the Asst. Sec. of Defense
- Michael J. DeCarlo, BlueCross BlueShield Assn.
- Christopher H. Delporte, Medical Device Daily
- Louis H. Diamond, Medstat
- Stephen J. Downs, The Robert Wood Johnson Foundation
- Mary Erikson, Department of Defense
- Linda Fischetti, RN, MS, Veterans Health Admin. (VHA)
- Alex Hersh, MyHealtheVet within VHA Office of Information
- Debbie Jackson, NCHS
- David Kates, WebMD
- Kelly L. Lavin, Amer. Osteopathic Assn.
- Barbara Marone, Amer. College of Emergency Physicians
- John D. Morgan, HealthRight
- Veronica Oberdorf, Department of Defense
- Dan Rode, AHIMA
- Scott J. VandeSand, Axiom
AGENDA ITEM: Welcome and Introductions: DR. SIMON COHN, Chair
Dr. Cohn is chairing the hearing rather than Workgroup Chair Dr. Lumpkin, who is phoning in. The meeting will be broadcast on the Internet.
AGENDA ITEM: Preliminary Report on Policy Issues for Federal Personal Health Record (PHR) Activities
Presentation: CYNTHIA BAUR, Office of Disease Prevention and Health Promotion, USDHHS
Dr. Baur explained that the study David Lansky will report on was commissioned by ODPHP to identify different perspectives and strategies about PHRs that are emerging across HHS and other Federal agencies.
DAVID LANSKY, Lead author, PHR Policy White Paper
The scope of the project is to review current federal activities and interest in PHRs, identify the policy implications of current or projected activities, and then suggest a framework for planning the appropriate federal roles in PHRs as the field evolves. The team has found that among the very diverse federal programs with an interest in health, the perception is growing of the possible value of PHR applications. Their report will likely suggest coordination in how the issues common to all these expansive ideas end up being mapped together. The heart of the report will address the appropriate government roles in PHRs.
AGENDA ITEM: Discussion of Preliminary Report presentation
- The difference between EHRs and PHRs and where they overlap.
- The need for an agreed-to taxonomy of what EHRs and PHRs are and how they fit together. (Ms. Fischetti referred attendees to the ISO Technical Committee for Health Informatics 215, which is publishing a scope and definition for EHRs and EHR systems, as well as the 1991 IOM report.)
- Metrics for evaluating the direction of PHRs.
- The role of the payer in a PHR, and the main types of PHRs that exist.
- The accuracy of the data contained in the PHR and its timeliness and time sensitivity.
Suggestions made for the report:
- Clarify the role of the federal government by distinguishing between a PHR record and the PHR system.
- Promote PHRs as having both universal and individual benefits from limited, controlled federal access to the data.
- Note how the federal government can enhance the public interest in PHRs.
- Address accountability—giving someone within the agencies responsibility for making action happen and for the cost of inaction.
- Determine in which strategic areas unified action is essential, such as data standards or patient control.
- Provide examples of things the private sector is not doing that the government should do.
- Call for the government to conduct research and evaluation.
- Provide information about the business case and the consumer case for adopting PHRs.
- Identify where PHR is actively taking place.
Dr. Deering asked Dr. Baur and Dr. Lansky to formulate some questions in the next few days about privacy under the NHIN and patient control of their health records. The NHII Workgroup will share them with Kathleen Fyffe, who will see that the questions are raised at the upcoming hearings of the Subcommittee on Privacy and Confidentiality.
AGENDA ITEM: Panel 1: Consumer Perspectives and Experiences with PHRs
Introduction: MARY JO DEERING, NHII staff
Dr. Deering asked each presenter to tell how he came to use his particular PHR system.
Presentation (by phone): GEORGE BROWN, CapMed user
Mr. Brown has participated in CapMed since 1999. He likes that the system enables users to review the history of their treatments and conditions, track when to make annual renewals and appointments, and has an “emergency key,” which is actually a jump drive that is about 128 mgs. Now an additional key has the complete PHR in CapMed built right into the key, which enables users to take their PHR from computer to computer, or to their doctor’s office, and plug it into any USB port.
Presentation (by phone): THOMAS FOLEY, Geisinger My Chart user
Mr. Foley is with Geisinger HMO, using its electronic system, My Chart. Using his password and ID, he accesses the system regularly to see the information Geisinger makes available. His record includes a health summary, along with his medications, test results, health reminders, recent visits, immunizations, and allergies. He likes the appointments feature and being able to find out the significance of the tests he takes. He does not have access to the notes that his doctor types into his record during his visits and wishes he did.
Presentation: JAMES MAGIERA, MyHealtheVet user
MyHealtheVet is important to Mr. Magiera, who is also a VA employee, because it gives him access to reliable information about his treatment and prognosis. MyHealtheVet also now allows veterans to self-enter information, whether from a military or private doctor. When Phase 3 of MyHealtheVet goes into effect, he plans to take his entire medical records to his private doctor, and everything his private doctor gives him back to his VA doctor so he will know Mr. Magiera’s full history of health and treatment.
Presentation: ROBERT BLAIS, MyHealtheVet user
Another VA employee, Mr. Blais, uses MyHealtheVet to record his health data. He likes being able to check his medications to see if they are compatible, and he can print out his findings and share them with his doctor. He noted that MyHealtheVet is not just for veterans; anyone can use www.myhealth.va.gov to track their medical information.
Presentation (by email): BONNIE THOWSON, Shared Care Plan user
Dr. Deering read an email from Bonnie Thowson about her experience with a PHR called Shared Care Plan, which she attributes with saving her life. When she had a diabetes-induced illness on a cruise, the ship’s medical team referred to a paper copy of the Shared Care Plan, which gave them all the information the team needed to treat her successfully.
AGENDA ITEM: Discussion of Panel 1 Presentations
- Whether patients understand the information they see in their records and the fact that some people can handle negative information about their health while others cannot.
- The need for better publicizing MyHealtheVet to veterans and whether the VA can take Mr. Brown’s USB and pour all the information he has collected over the past 10 years into MyHealtheVet for him.
- Barriers to PHR adoption, including lack of familiarity with computers, and lack of medical problems. For example, Mr. Magiera has observed that people in their 70s who have health problems are enthusiastic about using PHRs, but healthy middle-aged people are not.
- Patients’ propensity to choose doctors and health practices that have computer systems compatible with the patients’ existing PHR.
- Doctors’ reactions to the panelists when they show up at an appointment with lots of information to discuss.
- The three national health objectives raised in some of the issues discussed by the panelists: access to information, the intersection of health literacy concerns, and health information quality.
- Access controls to PHRs, and privacy and confidentiality concerns about health information.
AGENDA ITEM: Panel 2: Consumer Perspectives and Experiences with PHRS, continued
Presentation: DAVID WILLIAMS, TRICARE Online user
Lt. Col. Williams, who works for the military, gave an overview of eHealth through TRICARE Online and discussed the PHR. TRICARE Online aims to provide one-stop shopping for beneficiaries, regardless of where they are or where they move. It has a secure and an unsecure side. The secure side enables providers to log in from anywhere in the world and secure access to medical records. The service portals and learning management system are part of the PHR, which is on the secure side. DOD would like the PHR to be interactive with the EHR, and DOD is also working closely with the VA so that both systems have the same look and feel. Lt. Col. Williams reviewed the statistics for TRICARE Online showing growth in the use of the PHR, the cost-effectiveness for DOD of enabling online appointing, and a reduced no-show rate when appointments are made online.
Presentation: PATRICIA FLATLEY BRENNAN, University of Wisconsin–Madison
Dr. Brennan, a nurse and an industrial engineer, discussed PHRs in support of home nursing, especially in rural areas, and the Heart Care II project. PHRs actively help patients increase their self-awareness and ability to manage their own care day to day. Dr. Brennan showed photos of the many idiosyncratic but effective ways people store their health information, and concluded that the PHR is a record system—not a single record. PHRs should build on what people are already doing that is successful, she said, such as recording health information on calendars. Components of a PHR system include a self-monitoring component; a communication component; some clinical record content; and some decision support.
AGENDA ITEM: Discussion of Panel 2 Presentations
- The importance of people knowing that the information in their PHR is protected.
- TRICARE Online usage (10 percent of active duty forces).
- How examining patients’ actual lives and how they use PHRs will strengthen the end product designed for patient use.
- TRICARE Online’s business-partner relationships, and it efforts to discover and incorporate actual users’ preferences into either specific functionality or the sequencing of what DOD is doing. (Lt. Col. Williams offered to share the requirements development document with the NHII Workgroup.)
- The importance of including other forms of health information besides paper and computer records in data standards efforts, EHR definitional efforts, and interoperability efforts. PHR interoperability may have to extend to mobile devices, PDAs, and Smart Cards, as well as to people who are poor and not computer literate.
- Ways in which PHRs can yield a good return on investment.
- The modular approach to PHRs.
- Health-information storage strategies.
- Aurora is still talking to potential users about what capabilities they would want and use related to medication administration.
- In each household, one person usually coordinates the information for everyone in the household. This person reports that the medication-related kinds of information-management challenges tend to be uncertainly about drug interactions as well as remembering to refill prescriptions before they run out.
- In one of the TRICARE Online PowerPoint slides, the PHR should be on the secure side.
- The TRICARE Online chart comparing no-show rates contains a potential statistical identification problem.
- Since the TRICARE PHR does not communicate with the TRICARE Online system, only the PHR owner can release information in the PHR. The record the provider sees includes everything the provider placed into a legacy system, but not the information put in the PHR manually by the patient.
- The single most important recording tool that Dr. Brennan’s respondents in the home health study wanted was a list of which doctors they saw most recently and for the last five years.
- The Workgroup should address the needs of both computer novices and the computer savvy in its recommendations on PHRs.
- The Workgroup should recommend investments in the study of advanced technologies for personal health-information management.
- People working on EHRs and PHRs should begin to think about: “How do we integrate over time and space the content that we want to know about people?”
- Add to the list of stakeholders the “information chauffeur,” the person whose family job it is to manage the household’s health information.
AGENDA ITEM: Panel 3: Provider-Based Barriers and Benefits to Provider Adoption of “Tethered” PHRs and to Provider Acceptance of Patient-Controlled “Untethered” PHRs
Presentation (by phone): ANDREW M. WIESENTHAL, Kaiser Permanente (Kaiser)
Dr. Wiesenthal discussed Kaiser’s HealthConnect. Kaiser is in the middle of a multiyear EHR deployment and has a web portal that can be accessed at kaiserpermanente.org. Currently, members can schedule appointments, refill prescriptions, request advice from nurses and from their physician, access a large health encyclopedia, and conduct some business transactions. The Kaiser PHR will be tethered—it is part of the entire EHR—so patients will not be able to take the PHR anywhere they want. Physicians should be responsible for uploading information into their patients’ PHRs (and they should be reimbursed for doing that), and ensuring the information is accurate. Hospitals and other large providers should host PHR databases within local health information infrastructures.
Presentation: JAMES MAGIERA, MyHealtheVet Program Manager
Mr. Magiera works at the Bedford, Mass., VA hospital. He described how he started up a computer lab using donated equipment to teach veterans how to use computers. Part of that training includes orienting veterans to MyHealtheVet. He has promoted MyHealtheVet on a cable TV show, and to VA groups from Massachusetts to Rhode Island. Veterans’ family members are welcome to the MyHealtheVet classes, because many of them will use MyHealtheVet on behalf of the veteran.
Presentation: PETER BASCH, MedStar
Dr. Basch stated that his testimony to the Workgroup was as a practicing physician, and not formally on behalf of MedStar. Physicians agree that information within the chart belongs to the patient, but object to views of the PHR as replacing the physician’s medical record, or controlling physician access to the file, or as an added expense for physicians. Dr. Basch articulated the three issues that make physicians uncomfortable with PHRs: unclear definitions of the PHR; understanding ownership and control; and consequences of PHR use on physician time, cost, and complexity. He also discussed three other concerns about barriers to PHR–EHR integration: the importance of questioning the utility of PHRs, making the business case for information management; and identifying implications for medical documentation.
AGENDA ITEM: Discussion of Panel 3 Presentations
- How to incent EHR adoption.
- The importance of doing formal evaluations to discover the extent of the impact of large-scale IT and patient-safety programs.
- Continuity-of-care records (CCR), and their usefulness in PHRs.
- The content of medical records, how much of them is “junk,” and what should be in them.
- How to address physicians’ liability concerns related to control of the record and interfacing with PHRs.
- Whether ownership of information is itself a proprietary business advantage.
- How payment methodology issues among different types of physicians serve as a major barrier to successful adoption and optimal use of HIT.
- MyHealtheVet is a national program, though not uniformly implemented. Mr. Magiera’s computer system is separate from the hospital network system. According to a survey he gave computer lab users, they primarily want to know about their benefits and their health information, and they want to be able to get email.
- With untethered PHRs, the doctor’s record will be different from the patient’s PHR.
- David Kibbe did not present on Panel 3.
Suggestions for the Workgroup:
- “Bookmark” the issue of encouraging research initiatives.
- Encourage research to clarity the rules that help govern online PHRs.
- Encourage research on what kinds of information would be most useful to people.
- Refer to a spring 2005 issue of JAMIA (lead author is Dr. John Hsu that discusses the Kaiser Permanente experience based on data from 1999 to 2002.
AGENDA ITEM: Open Microphone Comments
Dr. Bickford asked whether the Workgroup planned to explore what is being done at the state government and local level in addition to the federal level.
MyHealtheVet is not just for use at VA medical centers; it is for veterans in general. Its implementation strategy integrates communications, training, and support. He noted that Mr. Magiera is one of about 200 points of contacts the VA has representing each medical center.
- Whether patient access to their full record is desirable or not, how that would affect what physicians write in the record, and how the HIPAA privacy rules affect PHR rules.
- Summaries of the major themes from the day’s testimony.
- Who the business case is for and how that is translated into the final form of the PHR.
Suggestions for the Workgroup:
- Do not define what the PHR is, but rather define its characteristics in a consistent way.
- Identify recommendations NCVHS could make that would move EHRs and PHRs forward.
- Seek feedback on PHR components from both providers and patients.
- Hold a hearing about patient access to medical records if the Workgroup decides resolution in this area is important.
- Consider which PHR information fields are appropriate to be automatically shared.
- Define the business case that would drive EHR and PHR adoption, and if it is strong, recommend testing it on a wider scale.
- Look for accommodation rather than specific standards for PHRs, so that the Workgroup does not inadvertently close the door to PHRs by making a value judgment.
- Ensure that privacy is part of the initial design of the architecture for the NHII and part of the design for PHRs from the very beginning. (Privacy will be addressed at the hearings scheduled for February and March, and that discussion can help inform the Workgroup.)
AGENDA ITEM: Panel 4: Business Case and Business Issues Related to PHRs:
Presentation: KATHLEEN KRANTZ, Greater Omaha Packing Company
Ms. Krantz described Greater Omaha Packing Company’s wellness program, which includes a PHR as one of its components and is administered through a contractor, SimplyWell. The company surveys its employees, who have access through the PHR to a confidential personal wellness profile based on their individual history, and a bilingual website solution. The company measures health outcomes and determines the corporate return on investment. The program is free of charge to employees. Greater Omaha’s healthcare costs increased only 7 percent versus 15 percent to 25 percent growth in the industry. The company’s injury-to-illness ratio is 5.9 percent (industry average is 20 percent), and its attrition rate is a very low 5 percent.
Presentation: DR. RITU AGARWAL, University of Maryland (Study of PHR Value)
The research she reported on is summarized in a couple of reports that she would be glad to provide to anyone in attendance. She began by summarizing the dilemma in healthcare. Then she talked about some of the opportunities afforded by IT in the healthcare sector, and discussed a field study of PHRs, talking about the respondents, the usage patterns, and most significantly, the perceived value of the PHR and in which dimensions of the PHR value is manifest. Finally, she spoke about what drives patients’ perceptions of value, and if they do see value in PHRs, how that affects their final usage of this new technology. She concluded with information on some ongoing studies at The Center for Health Information and Decision Systems (CHIDS) related to HIT and PHRs, and the need for more rigorous, targeted research.
Presentation: CATHERINE LIBERLES, Partners Patient Gateway
Ms. Liberlies gave the nurses’ perspective of the Gateway messaging system, which provides secure web-based services for patients, clinicians, and staff. Though patients can easily obtain lists of their medications and allergies, they cannot obtain their full record. Nurses find Gateway promotes greater efficiency and time management. Healthcare providers’ initially were concerned that Gateway would give patients more access to overburdened providers. Now, providers note better management of refills, referrals, appointment requests, and overall improvement with office efficiency and communication. Future plans include enabling patients to provide updates on family history changes and review their medications prior to their annual exam.
Presentation: PHILIP MARSHALL, WebMD
Dr. Marshall gave the WebMD perspective on the business issues of PHRs, noting both successes and challenges. The PHR at WebMD already achieves many of the following goals: integrating self-reported and professional data, including medical and medication claims, to create a complete profile of health history and health status; facilitating optimal benefits choices, including health savings account participation within employers and health plans, specific to the individual’s health and financial status; facilitating education around and optimal selection of treatment options; facilitating targeted, personalized information and messaging to consumers that can impact key health issues; and sharing essential health data with care providers.
AGENDA ITEM: Discussion of Panel 4 Presentations
- Cost-savings data on the Greater Omaha PHR, as well as statistics on use of SimplyWell by dependents of Greater Omaha’s employees.
- The variety of standards that WebMD uses to leverage its PHR, and user statistics.
- Consents and authorizations for WebMD’s PHR, which gives patients total control, but is not completely portable.
- Dr. Agarwal’s new study—with a larger, national, random sample of users of various kinds of PHRs, not just CapMed’s PHR. She expects results by April.
- The need for research that quantifies patient’s perceived value of PHRs, improvements in office efficiency, and reduction in cost.
- How WebMD determined which data to include in its PHR and whether allowances are made for employees who change jobs or retire and still want to access the portal.
- Providers’ perception and use of data from stand-alone PHRs.
- Definition of integrated versus stand-alone PHR.
- Topics for future research studies.
- How rising healthcare costs have spurred interest in HIT, from both the patient perspective and major payers of healthcare services.
- Importance of consumer demand in influencing adoption of PHRs, which drives ongoing diffusion of EHRs.
- Email demands on physicians as a result of PHRs, and physician incentives to adopt PHRs.
- Development of the healthcare IT market and whether it is still dependent on venture capital.
- The ROI from EHRs, and labor-savings on the provider side
- How PHRs can enhance the cost-saving potential of health savings accounts.
- How income and education correlate with Dr. Agarwal’s findings on early CapMed adopters.
AGENDA ITEM: Workgroup Discussion
Dr. Lumpkin suggested three “next steps” for the Workgroup: the issue of data standards as automation proceeds; the whole issue of research (“What is it we still need to know that we could recommend to HHS as part of our research agenda?”); and the need to better understand patient and provider factors in adoption of PHRs. He would like the Workgroup to hear more from providers, business, and patient representatives.
Other ideas for Workgroup next steps included:
- Come up with quantifiable impacts, such as on the cost of insurance products or the value of PHRs to consumers.
- Address privacy and liability concerns related to PHRs and EHRs.
- Fund solid research by scientists now so that answers can be generated in the shorter run that can help PHRs be interoperable.
- Break from government tradition and encourage HHS to be far more proactive in this area and to anticipate some of the trends, such as what the financial breakpoint might be for individuals to actually create the demand for PHRs.
- Decide on which topics to seek assistance from other NCVHS Subcommittees.
- Seek more in-depth information on examples of consumer-driven use of PHRs.
- Create a taxonomy to explain PHRs, based in part on input from health plans and other such groups. The Workgroup has not heard from many organizations that see a business case driving them to invest in EHRs and PHRs.
- Identify where the Workgroup can add value in the process of promoting EHR/PHR adoption.
- Address the effects of the paradigm shift in looking at not just driving the NHII from the viewpoint of providers and from public health, but from patients.
The following suggestions were made on how to divide up the Workgroup’s tasks:
- Have a panel of speakers from the untethered PHRs and their users discuss their consent authorization, authentication, privacy, security procedures, and practices to see how “patient control” is actually executed. The defining feature of untethered PHRs would be those that claim consumer control regardless of whether the PHRs are tethered or untethered. Dr. Cohn asked for confirmation that the Workgroup has asked to schedule another (probably day-and-a-half-long) session around this area.
- Hear in more detail the results from Dr. Ortiz’ study on PHR utilization, which will be out in March or April. Contact the lead author, John Hsu to present the results.
- Invite Dr. Agarwal to go into more depth, since she will also have new data to report by April.
- Mr. Kambic knows some Dartmouth economists who could address some of the questions the Workgroup has been discussing.
- Convene another meeting of the Workgroup in the latter half of April, Dr. Cohn said.
- Dr. Deering asked if staff members Dr. Ortiz and Mr. Kambic would draft a research agenda in time for the Workgroup to review before its next meeting in late April.
- She also suggested staff create a draft taxonomy and circulate it before the April meeting.
- Contact the American Health Information Management Association to ask for their assessment of the legal perspectives on EHRs and the aspect of ownership, especially on PHRs.
Dr. Cohn and Dr. Lumpkin thanked Jackie Adler for her many years of service and her contributions to the full Committee and the Workgroup, and presented her with a card and gift.
Dr. Cohn adjourned the meeting.
DETAILED SUMMARY—DAY ONE
AGENDA ITEM: Welcome and Introductions
SIMON COHN, Chair Pro Tempore
The focus for the next two days is on federal policy issues related to personal health records (PHRs). Following introductions, Dr. Cohn is chairing the hearing rather than Chair Dr. Lumpkin, who is phoning in. The meeting will be broadcast on the Internet.
Participants were asked to disclose any conflicts of interest. Two staff members of the Robert Wood Johnson Foundation are in attendance, Dr. Lumpkin stated, and the Foundation is interested in the subject as a co-funder. Dr. Cohn’s organization, Kaiser Permanente, has an interest in the hearings, and one of Dr. Cohn’s colleagues, Dr. Andy Wiesenthal, is testifying before the committee, though the topics he will be discussing are not obvious conflicts of interest. Linda Fischetti noted that The Veterans Health Administration will have two testifiers.
Dr. Cohn suggested changing the agenda for the second day so that the discussion follows the panel presentations. No objections were made.
The NCVHS introduced its vision of the national health information infrastructure almost four years ago, with the understanding that it would have to work in three dimensions, Dr. Lumpkin noted: the healthcare provider, the population health dimension, and the personal health dimension, of which a PHR is an important tool.
AGENDA ITEM: Preliminary Report on Policy Issues for Federal PHR Activities
Presentation: CYNTHIA BAUR, Office of Disease Prevention and Health Promotion (ODPHP)
ODPHP commissioned this study to identify the different perspectives and strategies emerging across HHS as well as at DOD and VA, and in particular to learn about strategies that envision PHRs as public health-oriented preventive health tools. The study was not intended to inventory what federal agencies are doing in PHRs; it is intended to identify points of consensus and disagreement as well as critically analyze the choke points, decision points, and opportunities the agencies are going to face in the near term.
Dr. Cohn interjected that the meeting is now being broadcast on the Internet.
Presentation: DAVID LANSKY
Dr. Lansky summarized the preliminary results of the study, which is currently at the midpoint. His team consists of Dr. Baur and himself, as well as Susan Kanaan, helping with both research and writing, and Josh Lemieux, who was a FACCT employee.
The scope of the project is to review current federal activities and interest in PHRs, identify the policy implications of current or projected activities, and then suggest a framework planning the appropriate federal roles in PHRs as the field evolves The team has found that among the diverse federal programs with an interest in health, the perception is growing of the possible value of PHR applications. Their report will likely suggest a coordinated effort in how the issues common to all these expansive ideas end up being mapped together. The heart of the report will address the appropriate government roles in PHRs. So far the team has conducted 13 formal interviews with representatives of 11 federal offices: Centers for Medicare and Medicaid Services (CMS), Office of the National Coordinator for Health Information Technology (ONCHIT), Food and Drug Administration (FDA), Veterans Health Administration (VA), Department of Defense (DOD), Centers for Disease Control and Prevention (CDC), National Cancer Institute (NCI), Agency for Healthcare Research and Quality (AHRQ), Office of the Assistant Secretary for Health for Public Affairs (ASPA), Office of Disease Prevention and Health Promotion (ODPHP), and the National Library of Medicine (NLM).
Dr. Lansky listed the many reasons for federal governmental programs to be involved in PHRs, a primary reason being the president’s 2004 announcement that universal availability of personal electronic health records over the next decade is a national goal. Other reasons include:
- PHRs are an important tool for achieving a number of goals of the major federal health programs, including patient-centered care, greater consumer control and empowerment, improved chronic-care management, and fuller translation of the health knowledge base;
- PHRs are a natural extension of many current federal roles;
- PHRs are a new platform for achieving existing and new federal policy goals;
- The federal government and its programs will be leaders in American healthcare;
- Unlike many other participants in the healthcare system, the federal government has a distinct responsibility to the public interest and the public welfare;
- Interoperability and connectivity in the healthcare system are considered essential for the viability of PHRs and the federal commitment to the interoperable health information network is considered a prerequisite to aggressive deployment of PHRs.
There is no uniform understanding or definition of what a PHR is, but this may be a strength since defining PHRs too assertively now could result in prematurely limiting the development of the field. Attributes of PHRs include: patients have control and understand what is in their PHR; patients have a broad ability to access the contents of that record; the PHR addresses privacy and security criteria; and there is a transparency to the construction and access of that record. Finally, there is a great variety of manifestations of PHRs across the federal agencies.
Dr. Lansky described five types of health-related activities that the federal agencies anticipate or are now doing. Two types of issues deserve further attention. The first category includes issues everyone working on PHRs needs to think about: privacy and information control; security issues; legal issues; cost issues; and interoperability with other PHRs and with EHRs. The second category of issues includes those distinct to the federal agencies, for example, whether there should be a standardized approach to PHRs across all the federal agencies, whether the federal government should define what a PHR is, and what the government should do to construct a relationship with the emerging PHR environment that both stimulates innovation and advances the federal agenda.
The consensus from interviews with federal agency staff reveals a high-level, widespread interest in PHRs, and agreement that the federal government should be a leader in standards-based approaches to PHRs, while encouraging innovation. Agency staff also agree that there should be some degree of high-level coordination and conversation about what the goals are and how the different activities are moving toward achieving them and that that dialogue should include entities outside of government that are active in this arena.
Issues for further discussion include:
- Federal access to personal clinical data—what should it be?
- What is the federal role vis-à-vis the private sector?
- How radical a vision of patient empowerment do the federal agencies want to undertake?
- To what degree do all federal agencies plan to make use of, support, or refer to a single model of what a PHR is versus developing their own model of what a PHR is?
- What are the federal “policies” regarding PHRs?
Mr. Blair suggested clarifying the role of the federal government by distinguishing between PHR record and the PHR system. He also suggested defusing the public’s fear of privacy invasion by promoting PHRs as having universal and individual benefits from limited, controlled federal access to the data.
To clarify the difference between EHRs and PHRs and where they overlap, Dr. Lansky referred to the tethered–untethered metaphor used in the past. Agency staff suggested that even untethered PHRs be designed to be tetherable so that individuals do not get “stranded” with an untethered PHR. Mr. Houston raised a third category of electronic record: the “sponsored health record.” Neither an EHR nor PHR, it is something someone sponsors for which there is additional access, rights, or interoperability.
Dr. Cohn suggested not rigorous definitions but an agreed-to taxonomy of what these things are and how they fit together, and a more sophisticated lexicon than the tethered–untethered metaphor. He also suggested metrics for evaluating the direction of PHRs.
Dr. Steindel asked that the report address the role of the payer in a PHR, as well as the four roles for PHRs: the amazon.com model, in which people use their PHRs to refill prescriptions and schedule appointments; the tethered PHR; the full-bore PHR, which allows tethering and untethering and is what President Bush generally envisions; and PHRs as a dissemination tool. He also suggested two additional aspects of PHRs are discussed: the accuracy of the data contained in the PHR and its timeliness and time sensitivity.
Dr. Steuerle suggested the report talk about the public interest in PHRs and how the federal government can enhance it, as well as accountability—whether someone within the agencies themselves ultimately bears responsibility for making action happen and for the cost of inaction. Dr. Lansky agreed Dr. Steuerle’s point should be addressed in the report.
“Consumer-driven healthcare” is really just the cost shifting on to the consumer, Dr. Deering observed. People are going to need a tool to manage their healthcare, regardless of which administration is in power.
NCI is very interested in standardizing the patient interface both for data entry and patient-entered data accuracy. NCI is also interested in the presentation standards. The HL7 PHR working group is getting under way in January 2005, so work in that area will begin to evolve. Dr. Deering made two requests: with regard to privacy and the public interest, she asked Drs. Baur and Lansky to formulate some questions in the next few days about privacy under the NHIN and patient control of their health records. The Workgroup will share them with Kathleen Fyffe, who will see that the questions are raised at the upcoming hearings of the Subcommittee on Privacy and Confidentiality. She also requested that the report address in which strategic areas unified action is absolutely essential, such as data standards or patient control.
Dr. Fitzmaurice would like the report to provide examples of anything the private sector is not picking up that the government should. The report should also state that the government includes research and evaluation, and providing information about the business case and the consumer case for adopting PHRs. Third, he would like to know where in the government PHR is actively taking place and where research and evaluation on PHRs are being done. He would appreciate recommendations about where PHR leadership should reside as well as a list of the criteria used to make that recommendation.
Ms. Fischetti suggested that if the report is going to take on the taxonomy issue, in addition to the 1991 IOM report, the ISO Technical Committee for Health Informatics 215 is publishing a scope and definition for EHRs and EHR systems.
Following a 15-minute break, Dr. Cohn introduced the first panel.
AGENDA ITEM: Panel 1—Consumer Perspectives and Experiences with PHR
Introduction: MARY JO DEERING
Mr. Brown and Mr. Foley were identified by CapMed and by Geisinger, respectively, Dr. Deering explained. She asked each man to say how he came to use his particular PHR system.
Presentation (by phone): GEORGE BROWN
Mr. Brown has participated in CapMed since 1999, when he was a computer novice and looking for a way to combine his medical records with his wife’s. Among its most useful aspects are a system that enables users to easily review the history of their treatments and conditions, a way to track when to make annual renewals and appointments, and an “emergency key,” which is actually a jump drive that is about 128 mgs. Now there is an additional key that has the complete PHR in CapMed built right into the key, which enables users to take their PHR from computer to computer, or to their doctor’s office, and plug it into any USB port.
When he sees a doctor for his high blood pressure, he downloads a graph that shows the readings he has taken over the past month or two, as well as his weight and his pulse readings over time. Since he and his wife take a lot of medications, they can review those in their PHR and see when the renewal dates are. He reports that doctors and nurses are impressed by his reports. For a system like CapMed to work for the general public, he believes the basic requirements would be a simple program with good personal support.
Presentation (by phone): THOMAS FOLEY
Mr. Foley is with Geisinger HMO, which asked him to try out Geisinger’s electronic system, called My Chart, about five years ago. Mr. Foley does not enter information into My Chart himself; Geisinger enters it and he accesses it regularly, using his password and ID. His record includes a health summary, along with his medications, test results, health reminders, recent visits, immunizations, and allergies. He makes appointments through My Chart, and he likes being able to find out the significance of the tests he takes. He can review his lab tests and make bar graphs of the results over time. Some of his records are posted for only a finite period of time, while he would rather his entire history of treatment at Geisinger HMO is permanently available through My Chart.
Mr. Foley does not have access to the notes that his doctor types into his record during his visits and wishes he did.
Presentation: JAMES MAGIERA
MyHealtheVet is important to Mr. Magiera, a veteran employed by the Dept. of Veterans Affairs (VA), because when he was 20 and an injury in Vietnam landed him in a rehabilitation hospital for three months, he was frightened and confused because he did not have access to good information about his treatment and prognosis. With my MyHealtheVet, he can easily look up what he wants to know, and because the electronic library has 11 million pages, he knows he can find what he is looking for. If he cannot, there are people who can help him find what he needs.
MyHealtheVet also now allows veterans to self-enter information, whether from a military or private doctor. That capability benefits veterans as well as service-members stationed in foreign countries, even Iraq and Afghanistan, who have access to computers. These records can be especially important to U.S. doctors when a veteran returns home from a war with health problems. When Phase 3 of MyHealtheVet goes into effect, he plans to take his entire medical records to his private doctor, and everything his private doctor gives him back to his VA doctor so he will know Mr. Magiera’s full history of health and treatment. “That’s all veterans want. They want to be cured,” he said. And “we want all our records, and that’s a big issue.”
Presentation: ROBERT BLAIS
Another VA employee, Mr. Blais, uses MyHealtheVet to record all his health information, and he likes that he can check his medications to see if they are compatible, and he can print out his findings and share them with his doctor. Users can also refer to an animation of any part of the body plus animated overviews of the parts of the body, the muscles, and the nervous system.
Presentation (by email): BONNIE THOWSON
Dr. Deering read an email letter from Bonnie Thowson, who uses a PHR called Shared Care Plan. The PHR helped save her life last summer, when she was on a cruise with her two 11-year-old granddaughters. She had told the girls where her Shared Care Plan information was, and they knew she had diabetes.
“We were getting ready for breakfast one morning and I suddenly … began to feel ill, then dizzy, and couldn’t focus. I told the girls I wasn’t feeling well and to get help. … One granddaughter took the paper copy of the Shared Care Plan with her to the medical office on the ship while the other stayed with me. …The Shared Care Plan saved my life. All the information the medical team needed was on the plan—medical conditions, meds, and dosages and allergies—all within their immediate reach.”
Mr. Houston was concerned about whether patients understand the nature of the information they are looking at in their records. Mr. Magiera said he does try to understand the information in his health record. While information on the Internet at large about a health condition may or may not accurate, he can trust the information made available through MyHealtheVet. He acknowledged that some veterans may be frightened by learning of the severity of their condition through research on MyHealtheVet, but says he finds understanding his medical conditions better makes him feel better. Mr. Foley reported that he finds the information made available from Geisinger HMO to be very useful and easy to understand.
Mr. Brown would appreciate the NHII Workgroup asking its contacts at the VA to better publicize MyHealtheVet to veterans. Mr. Brown has been going to the VA since 1952, and he had never heard of MyHealtheVet until today. Dr. Deering said the question to the VA is whether it can take Mr. Brown’s USB and pour all the information he has collected over the past 10 years into MyHealtheVet for him.
While Mr. Blair was glad to hear about the panel’s individual positive experiences with PHRs, he wondered if their experience has persuaded friends or relatives to try PHRs. Mr. Magiera cited lack of familiarity with computers as a common barrier among veterans. Mr. Brown has found that age correlates with willingness to use a PHR. People in their 70s who have health problems are enthusiastic about learning to use a PHR, but healthy middle-aged people are not very interested.
Mr. Foley had a urologist and an ophthalmologist who were not part of Geisinger and therefore could not input their information in the Geisinger system. He has since asked to see only doctors with access to his chart so all his tests will become part of his accessible record.
Mr. Magiera noted that MyHealtheVet has a lot of information for younger veterans, such as exercise programs and weight-lifting programs. Mr. Blais likes that MyHealtheVet enables patients to show their all of their health records easily to any doctor with a computer.
Dr. Steuerle asked about doctors’ reactions when the panelists have brought a lot of information to their appointment and want to talk about it. When he goes to a doctor visit with medical information on diseases or conditions the doctors know about, they seem to be very receptive, Mr. Brown said. But when the doctors are not as familiar with the medical condition, they act as though Mr. Brown is infringing on their medical territory.
Dr. Baur noted that there are three national health objectives on some of the issues raised by the panelists: access to information; the intersection of health literacy concerns; and the issue of health information quality—how some agencies are thinking about their roles as providers of reliable, credible information and how to integrate that with the PHR function.
Dr. Greenberg asked the panelists who enter information into their PHR who can access that information and how important it is to the user to keep some of the information they enter confidential. Mr. Brown has a password built into the key that plugs into the USB ports of computers. He only puts in the reports that he wants a particular doctor to see and can eliminate reports he does not want a particular doctor to access. Mr. Foley does not have strong privacy concerns, but he feels having to have a unique user name and password adequately protect his records, which is the same way Mr. Blais reports that MyHealtheVet works.
Mr. Magiera worries that someone outside the government could get his Social Security number and steal his identity, but thinks the benefits override the fears, and that MyHealtheVet is secure.
Dr. Deering asked Mr. Foley if he were to move out of state how important would it be for him to find another doctor that either has My Chart or a similar system. Mr. Foley said he would choose a provider or a group of providers that gave him access to a system similar to My Chart.
A study by Geisinger of 4,000 My Chart users asked participants how much their experience with My Chart would influence their choice of a provider in the future and got an interesting response curve, Dr. Ortiz said. Twenty percent of respondents said it would make a huge difference in their selection of a provider, and 20 percent said it would make absolutely no difference whatsoever in their selection of a provider. In between, it was just kind of an undulating little flat line. He noted that people accept a certain level of breach of security with online financial records. He asked panelists how they rated their concern about privacy about medical information versus privacy and confidentiality about financial information.
Mr. Magiera said security of both financial and health information is very important to him, and that education is the key: veterans and people in the private sector need to be taught to dispose properly of confidential information. Because Mr. Blais works in the IT field, he finds it is critical for computer users to be sure their computer is clean and protected so it is secure from hacking. Security is not a big concern for Mr. Foley.
Mr. Blais noted that MyHealtheVet is not just for veterans; anybody can use that web page [www.myhealth.va.gov] to keep track of their medical information.
Following lunch, Dr. Cohn reconvened the meeting and introduced the second panel.
AGENDA ITEM: Panel 2—Consumer Perspectives and Experiences with PHRs, continued
Presentation: DAVID WILLIAMS
Lt. Col. Williams, who works for the military, was an early eHealth user when the military wanted to deploy it in 2003. He now defines the requirements for eHealth. He gave an overview of eHealth through TRICARE Online and then talked about the personal health record.
The operational view. Since the U.S. military is active all around the world, the military health system (MHS) has to be available to users and providers at all times, as does the military’s system for the PHR and for eHealth.
TRICARE [www.tricareonline.com]. TRICARE Online aims to provide one-stop shopping for beneficiaries, regardless of where they are or where they move. TRICARE Online has a secure and an unsecure side. On the secure side, providers can log in from anywhere in the world and secure access to medical records. The service portals and learning management system are part of the PHR, which is on the secure side.
Current MHS eHealth functional overview. Included in this discussion was why web enrollment is desirable and the features of the learning management system, as well as facility pages, online appointing, the benefits link, and the online drug-interaction checker. No log-in is currently required to TRICARE Online. Currently, DOD contracts out for the PHR; it is a WellMed PHR. DOD would like the PHR to be interactive with the EHR, and DOD is also working closely with the VA so that both systems have the same look and feel. DOD is currently defining the requirements so that PHRs from DOD and VA can be easily synchronized.
Lt. Col. Williams reviewed the statistics for TRICARE Online showing growth in the use of the PHR, with 220,000 registered users of TRICARE Online and 6,060 people using the PHR. Among the popular features of the PHR were the information and self-tests on health issues that may affect users or their family members, and anonymity. He also discussed the statistics showing the exponential growth of online appointment making, and the cost-effectiveness for DOD of enabling online appointing. DOD has found that while the no-show rate military-wide runs about 7.5 percent, when appointments are made online, the no-show rate drops to 4.4 percent. He also discussed future capabilities the DOD is hoping to make available to beneficiaries and providers and its collaborative efforts with other entities.
Presentation: PATRICIA FLATLEY BRENNAN
Dr. Brennan, a nurse and an industrial engineer from the University of Wisconsin–Madison, began by introducing her co-investigator, Laura Burke, from Aurora Health Systems in Milwaukee. They discussed health at home, specifically PHRs in support of home nursing, and in particular, the concept of health as it occurs in rural areas where there is no central clinic.
Dr. Brennan discussed the Heart Care II project, on care of patients with congestive heart failure, which is characterized by progressive decline. She noted that calendars serve as the most critical health information-management device in the household. Calendars provide a point of organization, of reminder, of recognition and coordination for a family’s health information, and they are absolutely essential when it comes to managing people with complex health needs.
Nurses typically ask such patients to monitor several things. Keeping track of all the data generated is an information-management challenge for patients. The goal of health-information management and the goal of the PHR in-home care is to ensure the patient’s level of independence rather than to facilitate communication between a provider and a patient. The PHR actively helps patients increase their self-awareness and makes them better able to manage their own care day to day.
Dr. Brennan showed photos of the many idiosyncratic but effective ways people store the health information in their households, such as cupboards and countertops, file cabinets and bookshelves. She concluded that the PHR is actually a record system—not a single document. PHRs should build on what people are already doing that is successful, she said, such as recording health information on calendars.
A PHR system includes a self-monitoring component; a communication component; some content of clinical records; and some type of decision support, which may be asking a spouse, “Well, dear, what do you think I should do about this?”
Dr. Brennan also discussed a new project she is working on that builds within the Aurora system an interface that will be used both by patients and their home-care nurses to be an integrating source of some of the electronic information that will be available or entered in by the patient.
Dr. Brennan noted that the Workgroup earlier asked if healthcare providers welcome or resent the time demands of patients who come to appointments with lots of information. She said nurses find patientswithout information call a lot, so having a way to push information into the patient’s home might be very helpful. Patients are trusted actors in this process of health and healthcare. For more about her findings, she referred the Workgroup to the website at the health systems group at the U. of Wisconsin’s Industrial Engineering Dept.: [healthsystems.engr.wisc.edu].
Dr. Lumpkin noted the importance of people knowing the information in their PHR is protected.
Aurora is still talking to potential users about what capabilities they would want and use related to medication administration, Dr Burke noted.
In their study of how people manage health information in the home, Dr. Brennan said they found that one information manager usually coordinates the household. This person reports that the medication-related kinds of information-management challenges tend to be uncertainly about drug interactions as well as remembering to refill prescriptions before they run out.
Less than 10 percent of the active duty force uses TRICARE Online, and they are not required to use it yet, Lt. Col. Williams said. He confirmed Dr. Baur’s observation that on his slide showing secure and unsecure aspects of the TRICARE site, the PHR should be on the secure side, even though the educational resources and the calculators related to health resources would remain on the open side for the time being.
Dr. Deering asked Dr. Brennan to explain why she is going so deeply into patients’ actual lives and how they use PHRs, and how she thinks that will strengthen the end product. With support from the Intel Corporation and a partnership with the Dodge Jefferson Healthier Communities Partnership, they got into 50 houses, where they spent two to three hours per household. Their focus now is taking what people know and want to know about their health across time and extracting it into efficient design recommendations, which is quite difficult, she said.
Dr. Deering also asked Lt. Col. Williams to what extent he is seeking and incorporating users’ preferences into either specific functionality or the sequencing of what DOD is doing. “The requirements from the end users and the stakeholders are what drive our systems,” Lt. Col. Williams said. He offered to share the requirements development document with the NHII Workgroup. He also elaborated on TRICARE’s business partner relationships, which include managed-care partners—TriWest, Humana, and HealthNet—as well as the VA, DOD, and National Library of Medicine. Regarding reservists, Lt. Col. Williams said the system is still paper driven, so the reservists have to transfer their records from their military doctors back to their civilian doctors.
Dr. Steuerle pointed out a potential statistical identification problem in Lt. Col. Williams’ chart comparing no-show rates. If the people who use the computer to re-book appointments are those who would reschedule anyway, “then you may not be proving that you’ve actually reduced your no-show rate.” He suggested Lt. Col. Williams ask TRICARE Online providers for their reaction to the new system. Lt. Col. Williams reported initial push-back from clinics about revealing when the providers saw patients, but the big benefit to providers is that they can log in on TRICARE Online anywhere in the world and see their patient information. Since the PHR does not communicate with the TRICARE Online system, the only person who can release the information in the PHR is the PHR owner. The record the provider sees includes everything the provider placed into CHS-1, which is a legacy system. They would not currently see the information put in the PHR manually by the patient.
Dr. Steindel observed a difference in technical sophistication between the two populations the Panel 2 presenters deal with. Lt. Col. Williams has users who may put up personal satellite links so they can get Internet connection from the deserts of Iraq, while some of Dr. Brennan’s older, rural population keep their health records in the kitchen on top of their pet Rottweilers’ cage. He asked the presenters to comment on how the Workgroup should address the needs of both populations as it makes recommendations on the PHR.
Lt. Col. Williams noted that the military spans a large socioeconomic and age group, and so TRICARE Online is working on a congressional effort to encourage behavior change among seniors, especially in rural, underserved areas. Dr. Brennan’s research team has found that age is not as much of an issue as is motivation for a value-added part of the subjects’ lives. She urged the Workgroup to think about systems of PHRs, rather than a single PHR. She suggested the Workgroup consider the infrastructure in the household and infrastructure in the person’s life. She also urged the Workgroup to recommend investments in the study of advanced technologies for personal health-information management. For example, effective bar-coding, and effective integrated bar-coding systems within grocery stores and refrigerators could enable nutritional management to be done automatically. “I’m going to plead for personal health records to not be words and numbers that may be in a computer, but actually might be sensors and environmental monitors … to bring us aware households that aid in health information management.”
Dr. Deering observed that all the groups working on the EHR and other data standards issues are working within a closed universe of what constitutes health information, compared to what Dr. Brennan has suggested. There appears to be a challenge before us, Dr. Deering said. How can the people trying to move the field forward broaden those efforts, and how can these other forms of information be included in EHR definitional efforts and interoperability efforts? PHR interoperability may need to extend to mobile devices, PDAs, and Smart Cards, as well as to people who are poor and not computer literate.
Dr. Brennan suggested people working on EHRs and PHRs begin to think about: “How do we integrate over time and space the content that we want to know about people?”
Dr. Cohn wondered whether PHRs will end up following the functionality of separate pieces—such as the online appointment-making feature of TRICARE Online. Lt. Col. Williams confirmed that the online appointing yields a good return on investment, and that appointing provided the business case for an enterprise-wide portal.
The single most important recording tool that Dr. Brennan’s respondents in the home health study wanted was a list of which doctors they saw most recently and for the last five years. She also emphasized that the value of the PHR will be driven by the value of information in healthcare, which has yet to be shown to be as valuable as the people hoping to create PHRs believe. She thinks the modular approach to PHRs is a good one, so that individuals can focus on the programs most relevant to them, whether it is weight-loss, pregnancy, or something else.
Dr. Fitzmaurice questioned Lt. Col. Williams about the appointment no-show statistic he provided and questioned Dr. Brennan about what she would tell her study respondents to improve their ability to store and retrieve information. Dr. Brennan said she would not tell individuals which strategy to use, but rather make them more aware of the ones they do use and how effective they are. She is excited about a University of Washington project called “Keeping Things Found Group” that is basically a bag that keeps track of what is in it and what has been taken out of it.
Mr. Blair had expected early PHR adopters to be well-educated people already on information systems, but the testimony he heard today has made him reconsider that assumption.
Dr. Brennan added to the list of stakeholders the “information chauffeur,” the person whose family job it is to manage the household’s health information. That means that it might be not the sick person who is actually using his or her own PHR, but the sick person’s family member
After a short break, Dr. Cohn introduced the next panel, explained the changes in the presenter lineup, and disclosed that one of the presenters, Andrew M. Wiesenthal, and himself both work for Kaiser Permanente and are colleagues.
AGENDA ITEM: Panel 3—Provider-Based Barriers and Benefits
Presentation: ANDREW M. WIESENTHAL
Dr. Wiesenthal described Kaiser Permanente (Kaiser) and then talking about Kaiser’s HealthConnect. Kaiser has 8.3 million members, a commensurately large number of employees and physicians, and an annual operating revenue of $27 billion. Kaiser physicians only care for Kaiser members, and Kaiser members only go see them. Kaiser is in the middle of a multiyear deployment of an EHR and already has a web portal that can be accessed at kaiserpermanente.org.
In the next 18 months, Kaiser will be adding features and functions into that existing web portal so that members can access the medical problem list and all their laboratory results except where prohibited, drug profiles, immunization records, care plans, and physician instructions. Members will be able to create addenda to those records that will become part of their charts, and be able to do secure messaging with any members of their care team.
Currently, they can schedule appointments, refill prescriptions, request advice from nurses and from their physician, access a large health encyclopedia, and do some business kinds of transactions. The Kaiser PHR will be tethered—it is part of the entire EHR system. But patients will not be able to take the PHR anywhere they want to. The PHR will never be a substitute for true integration of a delivery system, Dr. Wiesenthal said, for several reasons:
- Some people will take the time to aggregate all of their health information from all their caregivers and enter it into a PHR, but most will not.
- If all the caregivers in a location do not participate in the local health information collaborative that would be necessary to feed a PHR, then the PHR will not be complete enough that medical decisions can be made on the basis of it.
- A lot of maintenance and use of PHR data that has to happen for it to be optimally useful. Pay-for-performance incentives could be helpful in this area.
- Vital information that physicians need to contribute to a PHR is still not digitized.
- No technical or business infrastructure exists to provide for routine maintenance of physician-contributed information. Physicians need to know if they are liable for out-of-date or inaccurate information in PHRs, and there should be rules about what goes in PHRs and who should have access to them.
- Is there an economic basis for the contribution of fee-for-service physicians?
Physicians cannot build the infrastructure of EHRs that can routinely feed standardized information into PHRs, but once built, physicians will have to be responsible for ensuring that the information they have is uploaded into the patient’s PHR, and that it is accurate. To fund the infrastructure, hospitals and large providers will need to host the PHR databases within local health information infrastructures. Doctors should be reimbursed for feeding data into PHRs. He listed three benefits of PHRs: patient access to information they need to take care of themselves; physicians and staff freed from having to be information brokers when they do not add value to the information; and the decision support feature of the PHR that helps patients use their doctors and nurses wisely.
Presentation: JAMES MAGIERA
Mr. Magiera works at the VA hospital and also teaches at the Bedford, Mass., VA hospital, but is technically a horticulturist. He teaches veterans how to grow plants in a therapeutic way. He and three other veterans created a computer lab at the hospital that has been instrumental in teaching vets how to use computers and how to use MyHealtheVet. They started with one donated computer in the greenhouse for tracking plant orders. The program now has 50 donated computers, all online, at no cost to the VA hospital except for his time and the classroom. Local students are encouraged to volunteer as teachers.
He showed the Workgroup photos of his computer lab that show how they have made it inviting and comfortable. It is available to VA personnel as well as veterans. Family members are invited to accompany the vets to the training classes, which run the gamut from basic to Excel, Microsoft Word, PowerPoint, HTML, and creating web pages.
Mr. Magiera appeared on a half-hour cable TV program to talk about MyHealtheVet. To take the program beyond the VA hospital, they have taken their instruction program to different veterans’ groups from Maine to Rhode Island to tell them about MyHealtheVet. Veterans’ family members want to come to the classes, because many of them will actually use MyHealtheVet on behalf of the veteran. Mr. Magiera has set up an information, registration, and help desk in the main entrance of the Bedford VA hospital. There is also a satellite computer lab for veterans to use after the main computer lab closes in late afternoon. The satellite lab is open seven days a week.
Presentation: PETER BASCH
Dr. Basch started off his presentation on “Overcoming Physician Resistance to the Personal Health Record” by asking for Mr. Magiera’s business card because MedStar Health is upgrading its computers and has hundreds, perhaps thousands, of computers will no longer be needed.
A physician for more than 30 years, Dr. Basch was the first user of an ambulatory EHR within his health system as well as an early adopter of patient-physician email, physician practice websites, and e-prescribing. He is also the medical director for eHealth for his health system and co-chair of the Physicians EHR Coalition, and the Small Practice Workgroup for HIT adoption of the eHealth Initiative. Disclaimer: his testimony to the Workgroup is as a practicing physician.
The physicians he spoke with about the PHR were uniformly in favor of providing better service to their patients and sharing information within their charts, and they all agreed that the information within the chart belongs to the patient. But many felt negatively about PHRs based on perhaps outmoded views of the PHR that defined the ultimate purpose of the PHR as replacing the physician’s medical record, or as a means of controlling physician access to the file, or as an added expense for physicians on top of buying and maintaining EHRs.
To help move EHR–PHR integration forward, Dr. Basch articulated the three issues that make physicians uncomfortable with PHRs:
- Unclear definitions of PHRs. The PHR definition acceptable to MDs is that every physician will continue to be responsible for creating and maintaining his or her own records, but hopefully by 2014, the records will be electronic and shareable.
- PHR ownership and control. He is thoroughly convinced that physicians have to retain ownership and control of their records because they provide the authoritative record of patient complaints, findings, diagnoses, medications, etc., and also the basis for payment and defense against billing fraud and defense against future malpractice claims. Still, PHRs can be formatted in such a way that a copy of the information is easily shareable with other providers, patients, and caregivers, and the EHR can be aligned with either a tethered PHR (owned and controlled by the physician) or an untethered PHR (owned and controlled by the patient).
- Consequences of use on physician time, cost, and complexity. He quibbled with Dr. Wiesenthal’s concept of PHRs relieving healthcare providers of being information brokers in situations where they add no additional value to the information, saying he functions as an information broker, adding value to health decisions by gathering health-related information from different sources and using his knowledge and experience to help patients make better decisions. PHRs should enable patients to get answers to their requests, make appointments, and refill prescriptions, as well as answer medical questions, reconcile conflicting data, acquire second opinions, and facilitate care coordination. But these extensions of enhanced connectivity are currently unreimbursable, and it would be extremely unwise to add more burden and unfunded work on pediatricians, internists, family practitioners, and primary-care physicians (PCPs), who already are on the lowest end of the MD pay scale.
Dr. Basch discussed three concerns about barriers to PHR–EHR integration:
- PHR—why bother? Most patients want PHRs because they have poor access to their own information or to their clinicians to ask questions, discuss problems, or seek care. These types of access problems are due to a flawed reimbursement system, one that makes physicians’ non-procedural contact with patients seem like a waste of time. PHRs will not satisfy these patient needs for access unless there is a concomitant business case for information management. The one circumstance in which he would like his patients to have an advanced, connected PHR is when caring for patients with multiple, complex, chronic diseases that require patients as active collaborators.
- The business case for information management. HIT adoption is worthless without accompanying process change that is oriented away from episodic and reactive care to proactive and continuous care, including care coordination. While HIT makes all of these activities easier and more effective, they still require added time, cost, and effort. This additional effort is not likely to be made without reimbursement, reform, or incentives, which is the basis for pay-for-performance programs. Incentives for technology adoption alone, whether for PHRs, EHRs, or their integrated use are likely to result in “digital dysfunction” and a waste of technological potential rather the four grand goals laid out by Dr. Brailer.
- Rethinking medical documentation. Most of what is in medical records these days, whether put in illegibly with pen and ink or legibly with computers, is useless. “They’re really full of junk,” he said. “They are bloated, they have unnecessary verbiage either to comply with ENM coding guidelines or to satisfy what I believe is a misconception—that longer notes equal greater protection against errors and malpractice.” To share useful information more effectively between providers or between providers and patients, the best approach is to reform the paper-based, problem-oriented medical record into a quality-oriented, standards-based, shareable record.
Upwards of 75 percent of Kaiser members report they have access to the Internet either at home or at work, and even without a particular health program, large numbers of people use the Internet to find health information, Dr. Wiesenthal commented.
Mr. Magiera does not know how many programs like his are going on at other VA hospitals.
Ms. Fischetti pointed out that MyHealtheVet is a national program, so there are MyHealtheVet programs throughout all the VA facilities, even if not all are as advanced as Mr. Magiera’s. From the VA perspective, Dr. Ortiz said, MyHealtheVet is not uniformly implemented, though the goal is for use of MyHealtheVet to be widespread. There are numerous national roll-outs of MyHealtheVet, but at the individual VA level, it is highly variable. None of the VAs he has been affiliated with has done anything to the extent of the Bedford, Mass., program. However, even though the VA has rolled out large-scale IT and patient-safety programs, it has not done what he feels is important: formal evaluations to discover the extent of the impact in terms of outcomes.
Mr. Magiera asked if anyone present knew of research on whether veterans improve by working with computers. He has found that all the veterans he has worked with have improved by using their minds once again. He noted that his computer system is separate from the hospital network system, and that while the hospital has restrictions; his system does not. But veterans have to comply with the computer lab rules, which include not visiting pornographic sites. Veterans do not use the computer just to write letters and play games. According to a survey he gave computer lab users, they primarily want to know about their benefits and their health information, and they want to be able to get email.
Dr. Basch feels patient involvement is necessary to make PHRs work, but he implores the Workgroup to consider whether it is necessary to involve all patients. Similarly, to incent EHR adoption, he believes incenting EHRs for all physicians is not necessarily wise.
A March or April issue of JAMIA will include an article (the lead author is Dr. John Hsu that talks about the Kaiser Permanente experiences based on data from 1999 to 2002 and that looks at use of eHealth during the same time. Because Kaiser is such a big group, the findings likely reflect what is going on in the healthcare world, Dr. Ortiz said.
Dr. Cohn suggested the Workgroup return to the issue of research initiatives.
Dr. Wiesenthal wanted to correct a misimpression Dr. Basch may have gotten. He emphasized the distinction between saying doctors should not be information brokers and what he actually said, that doctors should not be information brokers where they do not add value to the information. He also suggested two topics for research: clarity about what the rules are to help govern online PHRs and what kinds of information would be the most useful to people. Dr. Basch said he understood the distinction Dr. Wiesenthal was making, but said most of the time doctors do add value to information, commenting even when sending normal results to patients.
Dr. Fitzmaurice asked Dr. Basch whether continuity-of-care records (CCR), a data set that one physician wants to communicate to another physician via the patient, would be useful information for a PHR. Dr. Basch said the CCR has “enormous value,” in particular when it was a short summary rather than a multi-page document. If the CCR can provide targeted, structured handoffs that ultimately allow for relatively seamless transfer of information, he thinks it would serve a useful function to a PHR.
Dr. Deering asked Dr. Basch whether he was suggesting that there ought to be more careful ways to look at the contents of the health record and perhaps prioritize certain areas and whether the CCR is a step in that direction. Dr. Basch replied that he is not working with any of the standards groups to help them prioritize what they are standardizing. They do not want to hear his view that most of what they are mobilizing is junk, and that if they are successful it will be “disastrous to clinical medicine.” He recalled the recommendation of the advisory body to HHS on regulatory reform that recommended by an overwhelming vote to scrap the ENM coding guidelines, finding them as a waste of time. The entire concept of what should be in a medical record should be revisited, which will generate physician allies.
Dr. Wiesenthal said Kaiser has made strenuous efforts to get clinicians to look at what exactly should be in the record and how to structure that. He confirmed the reality of the constraints Dr. Basch mentioned. Primary-care providers in the U.S. have to do ENM coding to conform to the rules. If they do not, they could be guilty of fraud, which is now a felony. The specialty societies should also be trying to figure out what PHR content ought to look like, but they are not, he said.
Dr. Deering asked under what circumstances would Kaiser allow digitized information to be digitally transferred, and whether there are other non-software issues behind that action. Dr. Wiesenthal responded that Kaiser does not see ownership of information as itself a proprietary business advantage. Kaiser plans to allow member patients to show non-Kaiser physicians their medical records, and will enable patients to shift their information outside Kaiser because patients have the right and privilege to do that.
Dr. Cohn asked Drs. Basch and Wiesenthal to comment on whether a payment methodology issue is the cause of the differences in payment situations between internists and pediatricians. Dr. Basch agreed completely that the major barrier to successful adoption and optimal use of HIT is the dysfunctional payment system, which rewards only the volume of episodic care. He does see, however, the beginning of a shift away from that. Dr. Wiesenthal also agreed with Dr. Cohn’s observation, saying, “When incentives are lined up, you get what you want.”
Ultimately, the incentive is with the consumer, even when talking about pay-for-performance, Dr. Steuerle observed. He also asked Drs. Basch and Wiesenthal for recommendations to minimize physicians’ liability concerns. Dr. Wiesenthal believes physicians should not be held accountable for the contents of PHRs they post information to if they do not have easy-to-use tools for making sure the content is up-to-date. He recommends a honeymoon start-up period in which PHRs are available but not presumed to be complete or reliable. As PHRs become more prevalent, there should be a way to ensure that whoever is responsible for putting information into it can do that in real time and vouch for its accuracy. Also, whoever looks at a PHR should be able to tell when it was last updated and who was responsible for that.
Clarifying further, Dr. Wiesenthal said that with tethered PHRs, the information the doctor has is the same as what the patient has. But with an untethered PHR, the doctor’s record will be different from the patient’s PHR, and if physicians are expected to update the patient’s PHR as well as the office EHR, but the tools to do it are cumbersome, then the physician’s office record will be more up to date than the untethered PHR.
Dr. Basch assumes that with untethered PHRs, he will make either electronic or paper copies of information available because he believes, as most doctors do, that the information belongs to the patient. But he will not be the person typing in the information, reconciling it, or buying it for them. He regards liability in three separate areas. In the first, control of the record, his concern about liability was that physicians can never give up their medical legal record because they are duty-bound medically and legally to preserve it. In the second, interfacing with a PHR, he plans to tell his patients who want to use a PHR that he will keep a record of what he sends patients, but they determine what they do with the information and in what way they incorporate it into an untethered PHR. Physicians will always have a responsibility to review and interpret the information they receive—whether it comes via verbal, fax, phone, or electronic (PHR)— before they accept the information into their record. The third area has to do with extending liability in an interconnected healthcare system where information flows more freely, but that is not the work of the NCVHS.
Dr. Bickford noted that today’s discussion has been on the federal sector and asked whether the Workgroup planned to explore what is being done at the state and local government level. Drs. Cohn and Lumpkin said the Workgroup has not yet discussed its next steps.
Mr. Hersh assured the Workgroup that MyHealtheVet has a comprehensive implementation strategy that integrates communications and training and implementation and support. He noted that Mr. Magiera is one of about 200 points of contacts the VA has in the field representing each medical center. The focus is not just at the VA medical centers; it is for veterans in general.
Dr. Cohn clarified that David Kibbe did not present on Panel 3.
AGENDA ITEM: Workgroup Discussion
Dr. Huff said he thinks the Workgroup should do for PHRs something like what has been done for the EHR—not define what the PHR is, but define characteristics of the PHR in a way that is consistent so that people would be able to classify PHRs, talk about them, and communicate effectively about them. Another idea is to encourage people to create consistent content, in part by making the processes within offices more consistent. He observed approvingly that people are already inserting pictures, sound bites, and information besides text into PHRs. He sees the big challenge being identifying what the NCVHS could do that would be useful in terms of recommendations or encouragement that would move this area forward.
Dr. Ortiz observed that some pieces of the PHR are not controversial, such as scheduling appointments and refilling medication. Other parts of the PHR are controversial, such as whether or not patients should be able to read their entire medical records. He asked for feedback on the PHR components from both providers and patients.
Dr. Fitzmaurice asked whether veterans under Veterans Affairs are considered covered entities under the HIPAA privacy rules, which entitles patients to access their medical record, so that they can look at it, copy it, and add a page of amendment. None of the places rolling out PHRs or patient portals to their healthcare providers (including Kaiser, Geisinger, and the VA) let patients actually have access to their full record, Dr. Ortiz noted. Physicians would also have to be careful how they write their notes if they knew patients had access to them. As a veteran, Mr. Magiera said, he wants access to his entire record. “Let me determine whether I should have it or not—not you,” he said. But he acknowledged that he was not sure if all veterans could handle reading negative information about their condition, progress, or prognosis.
Dr. Cohn noted that usually health information is given to patients in an environment where questions can be addressed at the time. He suggested the Workgroup hold a hearing about patient access to medical records if the Workgroup decides there should be resolution in this area.
Dr. Deering suggested starting off defining what can patients see in their records and under what circumstances. She also suggested the Workgroup consider which PHR information fields can be automatically shared, so that when people write to those fields within the EHR they would be automatically pointed to the PHR. These components of the PHR would not proprietary, and readily standardized and exchanged.
Dr. Cohn said the access-to-records issue can not be resolved today, so the Workgroup will bookmark it for further discussion to decide whether or not to take more action on it.
Mr. Blair summarized the major thoughts he gleaned from today’s testimony:
- The Workgroup should examine more clearly exactly what would be the circumstances whereby individuals would agree to share information in their PHRs for clinical research and public research. PHRs could provide additional benefits if the information in them could be shared for public health purposes via certain federal agencies that could use it.
- If information is gathered and shared for public health and clinical research purposes, what should the privacy guidelines be for the personal health record?
- What needs to be included in the extended concept of interoperability for PHRs? There are many more besides including possibly mobile devices, laptops, chips, and bar codes.
- The Workgroup should clarify that the idea of PHRs and PHR systems has not converged to a single model. Multiple models all have value and probably should be accepted. The Workgroup should not restrict or create definitions that limit the way user needs are met.
Dr. Cohn concurred that the Workgroup has a responsibility to come up with uniform ways to accurately describe what is meant by PHRs and PHR systems. If the Workgroup is charged with coming up with interoperability standards, that charge relates to PHRs. Another would be defining the business case that would drive PHR adoption. The sole panel tomorrow will discuss the business case for PHRs. If a strong business case can be made, the Workgroup should recommend that it be tested on a wider scale. For that to be successful, interoperability standards will have to be defined. The VA experience reinforces the view that the elderly may benefit most from PHRs, as well as comprise the population that generates the business case for PHRs.
Dr. Steuerle thinks the ultimate demand for something for the consumer has to be the consumer, and businesses have to have the type of incentives to want to provide it.
Dr. Lumpkin noted that part of the difficulty in resolving these issues are that they require a value judgment, and that will probably be the charge of the Workgroup. If the Workgroup thinks there is value in something, even if the business case for it does not currently exist, then the Workgroup’s work has to reflect that there may be value and a business case in the future, even if not for another five years or more. That means the Workgroup may not be looking for specific standards for PHRs, but for accommodation so that the Workgroup does not inadvertently close the door to PHRs because the Workgroup has made a value judgment.
Mr. Blair is concerned about the segmentation of privacy. Privacy is a separate subcommittee of the NCVHS. If privacy is not part of the initial design of the architecture for the NHII and part of the design for PHRs from the very beginning, he fears public expectations will not be met. Dr. Cohn noted that privacy will be addressed at the hearings scheduled for February and March. He hopes those hearings will help inform the Workgroup.
Dr. Cohn adjourned the meeting.
DETAILED SUMMARY—DAY TWO
AGENDA ITEM: Welcome and Introductions
SIMON COHN, Chair
Dr. Cohn called the meeting to order and explained that he is standing in for Chair John Lumpkin, who is participating by phone. Dr. Cohn welcomed attendees and reminded everyone to speak clearly and into the microphone so that those listening on the Internet can hear. He asked members of the Workgroup to indicate during their introductions any conflicts of interest related to issues coming before the Workgroup today. None was stated.
The personal health informatics arena is developing very quickly in a number of diverse ways, Dr. Lumpkin said, and the Workgroup will try to figure out in what way the Workgroup’s advice to HHS can support rather than restrict that development.
AGENDA ITEM: Business Case and Business Issues Related to PHRs
Presentation: KATHLEEN KRANTZ
Greater Omaha Packing Company is a beef processing company with about 730 employees. It processes 15,000 cattle per week. The packing company has had a wellness program in place for more than 10 years that helps employees with disease management, and gives Greater Omaha an understanding of the culture and demographics of its employees. Ms. Krantz described some of the best practices the company uses in its partnership with SimplyWell, which administers the program. The company measures outcomes of the baseline data to determine the corporate ROI.
The Wellness Program includes several components: the Wellness Committee, annual health fairs, free preventative screenings onsite, comprehensive health-risk appraisals, onsite physicals, and education—which include electronic education.
She summarized the results of the survey of Greater Omaha employees conducted by SimplyWell in such areas as employer concern for employee health and safety; job satisfaction, and employer social support. Because Greater Omaha employees have a higher rate of diabetes than in the general population, the company designs programs to help employees prevent or manage diabetes. This year the company is focusing on weight management as well as improving fitness, coronary risk, and cholesterol.
She compared the current preventable risk scores with ones from three years ago, concluding that the SimplyWell program has been a success for Greater Omaha. The SimplyWell program also uses the claims from Greater Omaha’s insurance company to determine where the company has issues of concern in claim utilization. Emergency room (ER) use is one such area, and Greater Omaha has developed a communication and education session for its employees on how to avoid using the ER and instead utilize urgent-care facilities and self-care management. The company offers incentives for completion of the entire screening process, and it hopes to exceed 50 percent employee enrollment in 2005.
Greater Omaha’s healthcare costs increased only 7 percent versus a 15 percent to 25 percent growth in the industry. The company’s injury-to-illness ratio is 5.9 percent, compared to the industry average of 20 percent, and the company’s attrition rate is a very low 5 percent.
She gave an overview of the PHR and how the company has remained HIPAA-compliant. Employees have access to a confidential personal wellness profile based on individual employee history, and a bilingual website solution. Greater Omaha offers this program to employees at no charge, which is why Greater Omaha feels this type of program should be designed for everyone. SimplyWell charges Greater Omaha; Greater Omaha does not pass the charge on to employees. Employees are encouraged to take advantage of a privacy-protected program to help manage their health and live a healthy lifestyle. The individual investment is only 2 percent of a total healthcare premium cost per employee per month. That is the cost to Greater Omaha. As third-party administrator of the program, SimplyWell manages the hardware, software, disaster recovery, and IT for Greater Omaha, which makes it an ideal solution for private industry.
Presentation: RITU AGARWAL
Dr. Agarwal is a professor in the University of Maryland’s School of Business as well as executive director for the university’s Center for Health Information and Decision Systems (CHIDS). The healthcare industry lags behind in realizing the transformational potential of IT. The value of IT in achieving both operational efficiency and strategic value in the healthcare sector should be immense, and perhaps even larger than in financial services or retailing.
Additional research and ongoing studies in health information systems and HIT could prove extremely fruitful, and benefit many stakeholders, including health systems; health insurance providers; employers, who are constantly struggling to curtail healthcare costs; and of course individuals and patients. Interesting areas for inquiry include adoption of IT at various levels of analysis, including healthcare quality cost and efficiency, and the value of HIT. Currently there are not enough rigorous scientific studies to demonstrate that value.
Adoption of PHRs is the crucial prerequisite in the adoption of EMRs across the health system. Ultimately, if the individual consumer does not buy into PHRs, investors will not be persuaded that the technology is a worthwhile investment.
The PHR that CHIDS researched is a record stored on the individual’s PC produced by a company called CapMed, which is now a division of Bio-Imaging. The software is designed specifically for the individual, and the individual maintains all medical information. In this case, the PHR was not hooked up to any larger electronic medical record system.
Consumers’ concern about the safety, privacy, and confidentiality of their medical information is inhibiting widespread adoption of PHRs. Americans do not want their health information shared without their consent. For the most part, they believe that keeping medical records online in a connected electronic environment such as the Internet is risky. Some of these concerns can be ameliorated with education.
The primary goal of her research on PHRs is to accelerate adoption of PHRs. A secondary goal of the research was to understand the values and facilitators of PHR adoption, specifically the answers to the following questions: What value do patients perceive in a PHR? What do they use it for? How much do they use it? Do their behavioral characteristics or their demographic characteristics drive them to use PHRs?
They researched a sample of early adopters of PHRs and had an excellent response rate of 24.2 percent, with 69 percent male respondents and 31 percent female respondents. There was no response bias in the results. They found that the typical PHR user is male, between 51 and 60 year old, with a chronic illness—hypertension being most prevalent—who takes multiple medications daily, goes to the doctor 7.2 times annually, has completed graduate studies, and has a household income of $175,000. The typical use of the PHR is monthly, for 30 to 44 minutes, or a few times a week, for five to nine minutes.
There was a remarkable mapping between the healthcare tasks that patients found most important and the features of PHRs. Important uses of the PHR include storing family medical history, tracking individual family members’ personal health, and tracking visits to the doctor. Patients describe three primary types of benefits from PHRs: structure, organization, and compliance; improved relationship and connectedness with the healthcare provider; and convenience and empowerment.
In response to Mr. Blair’s request that she specify factors in addition to having a chronic disease that drives adoption of PHRs, Dr. Agarwal specified two more: the use of multiple medications and the number of doctor visits. She noted that younger consumers or younger patients see more value in the PHR than do older consumers. Education is negatively related to perceived value, which suggests that people who are less educated perceive more value in the PHR. The greater the perceived value of PHRs, the more likely individuals are to use them, which suggests as a policy matter that there is a need to devise strategies to amplify the perceived value. There is a policy implication here of targeting opinion leaders and champions who would serve as the primary role models and diffuse this technology to the general public.
Dr. Agarwal summarized a series of her ongoing studies, including ones on privacy concerns related to PHRs, the adoption of mobile technologies by doctors, and which features of PHRs are most important.
About half of Dr. Agarwal’s survey respondents said IT adoption by doctors and hospitals would influence their choice of a particular medical provider or medical facility, and another 20 percent said it would not, but it should. The business case is compelling, but many more targeted studies are needed to quantify the value of the PHR and the EMR not just on patients’ perceptions but also on the cost and quality of medical care. Cost-related concerns can be alleviated some by inducing employers to make PHRs available to their employees free of cost.
Presentation: CATHERINE LIBERLES
Ms. Liberlies gave the nurses’ perspective of the Gateway messaging system. Patient Gateway provides secure web-based services for patients, clinicians, and staff. Partners launched this portal access in February 2002 and patients were invited to access the service in June 2003. Administrative and clinical care tasks are managed through Patient Gateway.
The 17,000 patients at Women’s Health Associates have access to resources that include messaging, requests, provider practice information, a health library, and chart information. Though they can easily obtain their medications and allergies, they cannot obtain their full record. Administrative requests include prescriptions, appointments, and referral authorizations.
From the nursing perspective, Gateway promotes greater efficiency and time management in an increasingly demanding practice. It offers high availability to the patient; better communication with patients; faster response time; easier, more complete documentation; and a smoother workload, complementing the natural peaks and lulls of the day. It avoids wasted time on the phone and unnecessary interruptions for non-urgent matters, incomplete requests, and delays. When patients initiate messages that require physician input, the communication goes through the nurses first, and the entire exchange between patient, nurse, and physician is easily added into the patient’s electronic record. Documentation, therefore, is complete and thorough.
Healthcare providers’ initially were concerned that Gateway would give patients another form of access to overburdened providers. Providers are now generally satisfied with better management of refills, referrals, appointment requests, and overall improvement with office efficiency and communication. Future plans include enabling patients to provide updates on any family history changes and review their medications prior to their annual exam. They will also receive reminders for when they are due for a particular health screening, such as mammogram or colonoscopy. She left the Workgroup with handouts on data about how Gateway works in many dimensions, how it has grown, and what prompted its growth.
Presentation: PHILIP MARSHALL
Dr. Marshall presented the WebMD perspective on the business issues of PHRs. Self-reported lab and claims data have already become the lifeblood of the WebMD consumer-centric PHR.
WebMD’s PHR already achieves many of the following goals: integrating self-reported and professional data, including medical and medication claims, to create a complete profile of health history and health status; facilitating optimal benefits choices, including health savings account participation within employers and health plans, specific to the individual’s health and financial status; facilitating education and selection of treatment options; facilitating targeted, personalized information and messaging to consumers; and sharing health data with care providers.
Increasingly, the PHR is becoming the foundation for standardizing data in a member-specific way from a number of data sources. Those data sources include consumers as well as professional sources such as medical claims, medication claims, EHR data, and laboratory data. WebMD standardizes that data using a coding nomenclature foundation and ends up with a set of health risks, medications, conditions, test results, and immunizations that describe the essential data and profile for each person. That information is then used to drive decision-support applications, which include:
- Personalized messaging and content to engage consumers in their healthcare. Data sharing with care providers can be available at the point of care.
- Benefit decision-support applications to help consumers choose optimal benefits.
- Health savings accounts and flexible spending account contributions.
- Provider decision support as well as treatment decision support.
About 15 million people have access to WebMD’s PHR through their employer or health plan website. More than 20 million unique visitors to WebMD.com each month provide an opportunity to offer even greater access to PHRs. He showed the Workgroup examples of WebMD’s PHR implementations—including a medication summary page, and the Visits tab of the health record—and described what WebMD offers in the marketplace. The health record summary is available for printing, faxing, or electronically sharing with care providers.
WebMD has found that the PHR contributes valuable information into the overall profile of the user that drives the personalization of the website experience. That lends value to WebMD markets, because it increases the engagement of users through a more personalized experience.
Medications in the health record that are self-reported or imported from third parties link directly to WebMD’s “drug compare product” to facilitate appropriate drug switching. Also, targeted, secure messaging is a valuable feature because the user’s health record can be used to deliver secure communication to members, such as a targeted drug recall notice.
Challenges include uncertainties about whether HIPAA allows, enables, or even requires payers and providers to make personally identifiable data available to consumers using a PHR; technical and business complexities for health plans, employers, and other entities in making claims data, lab data, and other clinical data available for use within the PHR; the lack of standards and incentives for EMR/PHR data exchange; and finally, the nascent demand by consumers to actively manage their essential health data to ensure that accurate, up-to-date information is available for themselves and their care providers.
Dr. Marshall suggests public–private collaborations be formed that can support PHRs as an essential part of the HIT framework by encouraging entities such as employers and payers to offer private, portable, standards-based, and interconnected PHRs as a central part of their consumer health and benefits management strategy. He noted these public-policy opportunities:
- Continuing to support the universal provider identifier.
- Supporting the Continuity of Care Record (CCR) standard for information exchange between PHRs and EHRs.
- Supporting standards for common data fields stored and shared between PHRs and EHRs.
- Continuing to support SNOMED-CT® (the Systematized Nomenclature of Medicine Clinical Terms) as a common reference terminology standard and as part of the National Library’s UMLS (Unified Medical Language System) Metathesaurus.
- Supporting creation of a set of best practices for information security.
- Supporting government employees and CMS beneficiaries being among the first to be able to benefit from this new technology.
PHRs are not only a trickledown to doctor-based EMR systems. PHRs are not waiting for a national health information infrastructure to become useful; they are becoming useful today.
Following a brief break, Dr. Cohn opened the discussion for questions and comments.
Mr. Kambic asked for more information on the cost savings of PHRs. Ms. Krantz responded that Greater Omaha’s cost savings were generated by reduction in healthcare claims. When the rest of the country had a 15 percent to 30 percent increase, Greater Omaha negotiated a 4.4 percent decrease in its premiums primarily because of the utilization of its Wellness Program. There are still many challenges, but the program has to be a win–win for both employee and employer. Ms. Krantz’s program is actually a comprehensive employee wellness program of which the PHR is one element.
Mr. Kambic asked Dr. Marshall whether there are there any recognized standards that WebMD does not use. Dr. Marshall said WebMD historically has preferred HL7 feeds. To fully leverage the PHR, however, WebMD has invested a great deal in being able to accommodate a variety of formats, file types, and frequencies. It uses an internally built system of data standardization for mapping, which it does not currently plan to sell.
Based on a request from Dr. Deering, Dr. Agarwal clarified why she projected that income and education negatively related to perceived value though her research showed that early CapMed adopters were very high income, high education men. The extent to which this sample is generalizable to a larger population needs to be examined more closely. In a new study, they are working with a larger, national, random sample of users of various kinds of PHRs, not just CapMed’s PHR, and she expect to have results to report from that in two or three months.
Dr. Deering noted that WebMD executes total patient control over their PHRs, presumably even those offered through employers and plans. She asked Dr. Marshall to tell the Workgroup what his consents and authorizations are like, and whether there is any resistance from the employer and plan side to the notion of total patient control.
Certainly, privacy and security are first and foremost to WebMD, Dr. Marshall said. Since many WebMD clients have different business partners—such as third parties that do clinical interventions on behalf of their population—sometimes end users are encouraged to allow disclosure of their information directly to those intervention specialists so that processes like disease management can take place. However, WebMD is a consumer-controlled health record, so messaging to end users is sent without disclosing personally identifiable data to those sending it or facilitating its sending.
Mr. Houston asked if the patient’s perceived value of PHRs has been quantified and whether the improvement in office efficiency has been quantified. He specifically wanted to know whether patients to these portals have actually seen a reduction in cost, rather than a quantification from a statistical perspective. Dr. Agarwal said she is unaware of any scientific studies that have attempted to quantify it in dollar terms, and she suggested that area as an important set of studies to undertake. “We don’t have ROI studies on PHRs,” she said.
Ms. Liberles said the Partners health system has not added to patient costs, but that the cost down the road is being looked at. The numbers for overall practice efficiency are available in the material she has prepared to be distributed to the Workgroup.
Mr. Houston asked Dr. Marshall how he determined which data to include in the WebMD PHR, and whether allowances are made for employees who change jobs or retire and still want to access the portal. The WebMD PHR includes conditions, test results, medications, surgeries, allergies, and healthcare visits. The data details in each of those categories were driven by what data should be made available to care providers based on WebMD’s clinical experience and the data from professional sources such as claims data. Internally, WebMD has been trying to establish an agreed-on minimum dataset that would be exchanged between its own EHR systems and the PHR. When WebMD expands beyond internal WebMD to connect with disparate EMR systems using the continuity of care-based exchange mechanism, that dataset will be published. WebMD enables some portability of information, though it is not yet completely portable. The PHR is offered through WebMD’s health manager, as a subscription service through WebMD. But those who change jobs or retire cannot currently subscribe online as a private citizen.
Dr. Agarwal’s past survey was based on the population of CapMed users, Mr. Blair noted, and he asked what issues she hopes to determine from the broader survey she is now conducting, and when that information will be available. Dr. Agarwal explained that the new research is focused on understanding the privacy and security concerns that individuals have about PHRs and providing policy recommendations on how those privacy concerns can be alleviated. Some secondary objectives of the study are to substantiate and extend significantly the findings from the early adopters of PHRs and to see if the same demographic and behavioral characteristics also show up in this larger sample. Results should be available by April.
Dr. Ortiz presumes that stand-alone PHRs are not nearly as beneficial as PHRs whose information is integrated into the medical record and used by healthcare providers to make clinical decisions that will improve safety and quality of care. He asked whether healthcare providers use information from non-integrated types of PHRs, and if so, in what way and how often. He also asked whether healthcare providers regard non-integrated PHRs as valuable from a patient perspective, a provider perspective, or both. Finally, he was curious if provider organizations are interested in integrating data that is not theirs into their own health record.
Dr. Agarwal said Dr. Ortiz has actually outlined a series of important research questions that her group has been using as a way to formulate future research studies. For example, she said the CHIDS group has been trying to design a controlled experiment in which they would provide physicians with different levels of data detail drawn from different types of PHRs and then try to understand exactly which aspects of this information are being utilized in a clinical decision-making situation. Such a study is incredibly difficult to design and to execute.
Her anecdotal evidence from interacting with insurance companies and other major payers of healthcare services suggests that they are extremely interested in HIT because they see it as a way of curtailing their own costs and improving their efficiency. Dr. Agarwal expects electronically integrated medical records—where there would be seamless integration from what is entered in an individual PC in a household to the same patient’s health information stored at a hospital—are at least a decade away.
Ms. Krantz concurred with Dr. Agarwal. Consumer-driven healthcare has been forced on the country because of rising healthcare costs, so solutions have to be based on needs assessments, and she feels employers can make a great difference in this area. Patients have to be part of the whole process, and the only way that they can be is if employers educate them about their health. And the only way to do that is for patients–employees to go through a health-risk appraisal. In response to Dr. Ortiz’s query whether the information generated by the wellness program is being used outside Greater Omaha by clinicians that see these patients, Ms. Krantz said that through SimplyWell, Greater Omaha offers a liaison to medical providers.
Dr. Marshall noted that the definition of integrated versus stand-alone PHR may be somewhat different since the word “integrated” is also used to describe the PHR as part of a system that can drive decision making. He also pointed out that WebMD’s health record summary is going to be part of a launch of a provider portal on behalf of a large East Coast payer. In response to Ms. Fyffe’s question about how many unique PHR users are using WebMD’s PHR, he said he does not have the exact number, but that about 15 million people have access to the PHR through the websites that WebMD produces for employers and health plans. He generally sees about 25 percent to 30 percent of users proactively using the PHR without the benefit of having data imported from professional sources. WebMD has seen a sevenfold increase in the use of the health and benefit management website in the month after professional data import into the record compared to the same amount of time prior without the import of that data.
In response to Ms. Fyffe’s questions, Ms. Krantz said Greater Omaha provides family coverage. As for the statistics on how well the dependents of Greater Omaha are grasping the SimplyWell program, she said that one of the reasons Greater Omaha was able to negotiate good premiums is because the company has contained disease management taking place within its employee demographics. And the company measures data on employees and family members. Dr. Yasnoff said Greater Omaha also has data on other installations and is willing to share it.
Dr. Agarwal said she thinks the adoption of PHRs is key to ongoing diffusion of EHRs because most medical professionals are quick to adopt medical technologies, but less inclined to adopt information technologies that might significantly change their work practices. Thus, the primary driving force behind EMRs has to be the individual consumer, or patient.
Even though intermediaries sometimes gain, and even when employers gain in a competitive environment, the labor force ultimately gets the benefits, Dr. Steuerle argued. He asked whether physicians have much incentive to respond to emails and how they would charge for it. He thought physicians would be reluctant to put in writing an uncertain diagnosis for fear it could be used against them in a lawsuit. He also was curious about how this market is developing and whether developers still depend on venture capital or whether it is becoming profitable.
Ms. Krantz said she thinks the insurance carriers offer many of the same solutions that WebMD does, but she thinks SimplyWell’s solution is a more integrated solution for companies like hers. Much more effort is needed to educate employees about their health and provide them with resources. Greater Omaha declined to go with the insurance-carrier solution, because it did not have onsite interaction and could not provide bilingual health education. One size does not fit all.
Partners is in the pilot stage of its patient–provider email system, Ms. Liberlies said, which was started up through grants. Emails go through Patient Gateway and are channeled to the appropriate place. The nursing staff filters what can be handled at their level and sends the remainder on to physicians for their input. She said that if the email system grows too rapidly, it could be overwhelming, but they have not seen that yet. Since Partners’ email system is funded by grants, the costs down the road are not clear. She did note that BlueCross BlueShield offered reimbursement for this type of interaction, which Partners has declined.
Dr. Marshall said PHRs are part of a broader integrated-value proposition that WebMD brings to sponsors of that capability, whether large employers or interested parties such as health plans. The integrated health and benefit management scenario is what they purchase from WebMD. So, that aspect of PHRs has been a profitable business for WebMD.
Dr. Vigilante is skeptical that anything other than strong financial incentives will make physicians adopt EHRs. Short of consumers refusing to go to doctors who do not offer PHRs, he does not see PHRs as a strong driver for physician adoption. Though the financial incentives do not yet exist, Dr. Agarwal thinks doctors do not understand the value PHRs can bring to their clinical decision-making process. Until data or evidence show that physicians can improve the accuracy of their clinical decisions by X percent, or can reduce the time it takes to make this diagnosis by Y percent, or their patient will recover six months earlier, the incentive to adopt the technologies does not exist. That type of incentive, in addition to the financial incentives, would help get physicians to buy in to PHRs and EHRs as well.
Dr. Vigilante observed that Ms. Liberles noted earlier that when projecting the benefits of EHRs, the ROI, people frequently talk about labor savings on the provider side. He thinks EHRs will result in an absolute reduction in full-time employees (FTEs), which will save salary or take the costs off the bottom line. Or if a company embraces EHRs and cannot reduce FTEs, it will be able to divert people from administrative tasks to more productive clinical tasks. Ms. Liberles said that Gateway has been able to eliminate two support staff positions with the use of both EMR and the Gateway. She also confirmed that it has been very helpful for the nursing staff by increasing time allocated to clinical functions and decreasing time on the phone or doing administrative functions.
Dr. Vigilante also wanted to know whether people who choose health savings accounts (HSAs) and other consumer-driven healthcare products are more or less likely to use PHRs. Dr. Agarwal does not have data on that, but she does have data on the extent to which the doctor’s or hospital’s adoption of EMRs drives consumer choice to go to that doctor or hospital.
What creative ways are there in which the use of a PHR would enhance the cost-saving potential or the efficiencies of an HSA, Dr. Vigilante asked. A PHR can help HSA participants, Dr. Marshall responded. First, a PHR can be used to aggregate the information coming back from the claims process, give insight into cost-to-date, and weight that against the amount of contribution to identify the amount of financial out-of-pocket risk that the person might bear later in the year. Second, in leveraging a profile, an employer could personalize information to the user about opportunities to lower costs, such as medication costs, and that could potentially lower the HSA contribution as well.
Ms. Krantz added that without the PHR or personal profile, consumers do not have any way of knowing the management piece of what is best for them if they are forced into having an HSA or a health risk assessment (HRA), so this would be another tool for them.
AGENDA ITEM: Workgroup Discussion
Dr. Lumpkin suggested three “next steps” for the Workgroup. First, the issue of data standards as automation proceeds. Second, the whole issue of research: “What is it we still need to know that we could recommend to HHS as part of our research agenda that we’ve been discussing in all the Workgroups and Subcommittees?” Finally, he believes the Workgroup needs to better understand patient and provider factors in adoption of PHRs. He would like the Workgroup to hear more from providers, from business, and from patient representatives.
Mr. Houston feels strongly that the Workgroup should come up with some quantifiable impacts, such as on the cost of insurance products or the value of PHRs to consumers. The basis is out there for getting that information together; it is just a matter of doing more work.
“I heard a rumble in the last two days,” said Mr. Blair. “And the rumble was a major paradigm shift.” The paradigm shift is that the Workgroup may be looking at not just driving the national health information infrastructure from the viewpoint of providers and from public health, but from patients. That means, for example, that the Workgroup cannot presume that the PHR contact will probably be a derivative of the EHR. The perspective on privacy issues and the drivers for interoperability may also shift with this paradigm shift.
Dr. Steuerle keeps trying to identify where the Workgroup can add value in this process. He sees a market developing, but he is not sure where the Workgroup adds value other than being a convener. Privacy and liability are two major barriers to fuller development, not just of EHRs but PHRs, and he raised the question about what the Workgroup should do in both areas.
In the privacy area, his concern is that too much attention is given to protecting people’s privacy from being violated, but not enough attention is given to the fact that the privacy concerns are blocking adoption of EHRs, and that results in actual losses. The Workgroup should encourage more research on privacy concerns as barriers to EHR adoption.
The threat of liability is the other barrier that might be preventing this market from developing. There is likely to be major momentum in Congress to change tort law in 2005. Should the Workgroup hold hearings on the extent to which tort law itself is going to be affected by development of records? Is there a government function related to liability that the Workgroup should be examining?
Mr. Kambic discussed his effort to do literature searches to determine the impact on malpractice premiums for physicians who use PHRs. Many people say PHRs have enabled them to eliminate two or three coders, but they typically do not account for the cost of the IT and the support. As IT gets more complex, employees will be needed who cost more than the coders, to run the IT programs to ensure there are no disastrous medical errors. Another problem is that solid research—by scientists—takes time, and research outcomes are not going to be reported for several years. He suggested the Workgroup start funding that type of research now so that answers can be generated in the shorter run that can help PHRs be interoperable.
Dr. Baur pointed out that the Workgroup is interested in infrastructure issues—things that will make interoperable PHRs eventually happen. She thinks the Workgroup should break from government tradition and encourage HHS to be far more proactive in this area and to anticipate trends, such as what the financial breakpoint might be for individuals to create the demand for PHRs.
Dr. Cohn asked the Workgroup to consider what its next steps should be. Mr. Houston suggested the Workgroup continue evaluating whether other NCVHS Subcommittees can assist the Workgroup investigating issues related to PHR adoption and interoperability. But topics must first be decided, he said.
Dr. Deering named some of the staff who helped her identify and invite the people who testified at this hearing. Mr. Blair suggested the Workgroup now drill down deeper, especially in areas where there are examples of consumer-driven use of PHRs. The areas he expects to be more difficult for the Workgroup are those that go from the grassroots up. He suggested the Workgroup ask some of the users of the systems discussed at these hearings to testify again, so the Workgroup can gain an understanding of how patient-driven interest grows upward.
A taxonomy is still needed to explain PHRs, Dr. Cohn reminded the Workgroup. He suggested the Workgroup hear from health plans and other such groups. The Workgroup has not heard from many organizations that see a business case driving them to invest in EHRs and PHRs, he noted.
Mr. Blair suggested asking AARP and other consumer advocacy groups to share their thoughts.
Dr. Cohn asked everyone to consider how to divide up the Workgroup’s tasks.
Given the interest in untethered PHRs, Dr. Deering suggested having a panel of speakers from the untethered PHRs and their users about their consent authorization, authentication, privacy, security procedures, and practices to see how “patient control” is actually executed. The defining feature of untethered PHRs would be those that claim consumer control regardless of whether the PHRs are tethered or untethered.
Security issues are more of an issue in tethered PHRs, Mr. Houston observed. Dr. Cohn agreed. He also agreed with Dr. Deering that the Workgroup could flesh out what needs to be explored in those two areas. Dr. Cohn asked for confirmation that the Workgroup has asked to schedule another (probably day-and-a-half-long) session around this area.
Dr. Vigilante said he would like to hear more detailed results of the study Dr. Ortiz did regarding PHR utilization that will be out in March or April. Dr. Ortiz briefly summarized the study of MyHealtheVet’s 117,000 users. For more details, he suggested that the lead investigator, John Hsu be invited to testify at the Workgroup’s next hearing.
Mr. Houston suggested Dr. Agarwal be invited to go into more depth, too, since she also indicated she would have new data by April. Mr. Kambic knows of Dartmouth economists who could address some of the questions the Workgroup was discussing.
The Workgroup will plan to meet again in the latter half of April, Dr. Cohn said.
Dr. Lumpkin said the Workgroup had been expecting to plan an additional day-and-a-half hearing even before this hearing began. He agreed with Dr. Cohn that the Workgroup should also look at some of the tasks before it and see what is more appropriately handled by other NCVHS Subcommittees and at the Executive Subcommittee conference call later in January.
Dr. Deering wondered whether Dr. Ortiz and Mr. Kambic, two people on the staff who are particularly interested in research (and anyone else who cares to), begin to draft a long-overdue research agenda in this area. She also suggested getting a draft taxonomy circulated. Enough work has been done that it should not take too much effort to complete it, she said. Dr. Cohn endorsed the idea so that the Workgroup could see a draft for the next meeting. Dr. Deering observed that those two items will be deliverable pre-April
Dr. Steuerle asked that any time the Workgroup makes decisions, it be clear that the Workgroup is adding value, whether it is in identifying research that should be done, or decisions or laws that should be made. He noted that the Workgroup has not heard much from lawyers or had a discussion with CMS about what might be good in terms of demands for PHRs.
Mr. Kambic noted that the American Health Information Management Association is soon going to be looking at the legal perspectives on EHRs and the aspect of ownership, especially on PHRs.
Dr. Cohn asked people with additional suggestions for the next session share them with Dr. Deering. Since today is Jackie Adler’s last day of formal activities for the full Committee and for the Workgroup, Dr. Cohn thanked her on behalf of the Committee and the Workgroup, and presented her with a card and gift. Dr. Lumpkin said it was difficult to convey how much the Workgroup will miss her. “And Miss Jackie, you’ve really helped this Committee through an important time of transformation and best of luck in retirement,” he said.
Dr. Cohn thanked the Workgroup for allowing him to help Dr. Lumpkin by chairing the hearing for the last day and a half, and then he adjourned the meeting.