Washington, D.C.
The NHII Workgroup of the NCVHS was convened on August 7, 2003 at the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
The NHII Workgroup held hearings August 7, 2003 on the NHII personal health dimension (PHD). The group received five presentations and considered with participants the NHII conference, proposed progress measures for NHII, a recommendation to the Secretary to increase HHS participation in federal interagency information technology (IT) R&D, other aspects of the PHD and additional opportunities and priorities for 2004.
ACTIONS
The Workgroup approved a letter and recommendations to the Secretary to increase the participation of HHS agencies in federal interagency IT R&D initiatives advancing NHII.
REPORT ON NHII CONFERENCE AND FOLLOW-UP - Dr. Yasnoff
Dr. Yasnoff said the Secretary announced at the conference the government’s licensing of SNOMED and the Institute of Medicine (IOM) and HL7’s initiative to define the functionality of the electronic health record (EHR). The Secretary requested quarterly status reports on NHII. Within the Department, there was agreement on the need to pursue this vision and numerous discussions on how to proceed.
DISCUSSION OF PROPOSED PROGRESS MEASURES FOR NHII - Kathleen Fyffe
Ms. Fyffe summarized the measures. The aim was to monitor progress toward fully functioning NHII. Measures were divided into macro measures, scope of EHR usage by type of health care setting, and EHR function measures. Ms. Fyffe noted a set of measures was vital in producing the quarterly reports. Cautioning that quarterly reporting could be problematic, Dr. Lumpkin suggested recommending to the Secretary a minimum of annual reporting. He noted that the measures should reach out to other dimensions and the interconnection for interoperability between dimensions. He encouraged use of CHI and the Data Council to generate measures before engaging in actual agreement beyond the agency.
DISCUSSION OF DRAFT LETTER TO SECRETARY RECOMMENDING INCREASED HHS PARTICIPATION IN NII R&D – Workgroup
Dr. Lumpkin read aloud the letter to the Secretary recommending increased HHS participation in federal interagency IT R&D. Members discussed and edited the draft. (See Actions.)
PANEL - PERSONAL HEALTH DIMENSION
Dr. Lansky presented the conclusions of work accomplished under the auspices of the Markle Connecting for Health Task Force. He identified considerations in contemplating the shift to the patient as a full information partner in the PHD and reported the results of a survey of online Americans regarding a personal health information system. Dr. Lansky said the public was ready, but the public voice was not driving the investment and infrastructure development climate. He recommended collectively creating advocates among the general public.
Dr. Hammond reported that HHS had commissioned/encouraged IOM and HL7 to create EHR functional standards. He noted the lack of a common definition of EHR and EHRS; the wide range in background, experience, and perspective; and lack of common documentation and terminology.
Mr. Rother conveyed the need to be more personal in how health information was translated to the consumer and emphasized the need to translate the personal health records (PHR) into decision support for individuals. He stressed the need for leadership from HHS and the federal government, not only in setting standards, but also in developing financial mechanisms to promote investment.
Emphasizing that the PHD was broader than the PHR, Dr. Overhage noted other aspects, benefits, and challenges of the PHD.
DISCUSSION OF OPPORTUNITIES AND PRIORITIES FOR WORKGROUP’S ATTENTION IN COMING YEAR, NEXT STEPS - Workgroup/Panel
Participants discussed the PHD and identified directions for future hearings and activities related to the personal health initiative. Activities include recommending maintaining a directory of PHR projects; conducting hearings and making recommendations on both the research agenda relating to the PHD and addressing business, cultural, and financial barriers to participation of providers in developing the PHD; and encouraging a personal minimal health information e-document.
DETAILED SUMMARY
The details of all presentations can be found in the meeting transcript posted on the NCVHS Web site, www.ncvhs.hhs.gov
CALL TO ORDER, WELCOME, INTRODUCTIONS, REVIEW OF AGENDA
Dr. Lumpkin called the meeting to order, asked all present to introduce themselves and, in describing the day’s emphasis on the PHD, noted that the PHR that the Workgroup was already focused on was only a piece of that dimension. He congratulated the first speaker, Dr. Yasnoff on a very successful NHII conference.
REPORT ON NHII CONFERENCE AND FOLLOW-UP - Dr. Yasnoff
Dr. Yasnoff reported that the Secretary announced both the government’s licensing of SNOMED and IOM’s and HL7’s initiative to define the functionality of the EHR. The Secretary also requested quarterly status reports on NHII.
Recommendations regarding privacy and confidentiality include: establish permanent independent entity to oversee/advise NHII; establish an ethical, legal and social issues (ELSI) program (similar to the Human Genome project program) to address these issues in the context of NHII; educate the public about HIPAA and NHII, and evaluate existing infrastructure projects gauging public confidence in NHII.
Architectural recommendations specify: a NHII task force (like IETF); an architectural roadmap; regional steering committees; non-proprietary, standards-based architectural elements; interoperable security; a specified communications protocol; proceeding without a national unique identifier; funding demonstration projects and labeling data at the source.
Standards and vocabulary recommendations include: recognizing that standards are not self-improving and standard messages and vocabulary are unaligned, that HHS create a process to update and enhance standards, aligning message formats and vocabulary standards, accelerating adoption of NCVHS- and CHI-recommended standards, that CMS create financial incentives for providers to use standards, and certifying standards and vocabulary implementations.
The overall recommendation for safety and quality is to move from a cross- to quality-driven system, developing standards for national quality and safety performance measures (AHRQ funding), redirect $1 billion in research funding to examine quality/safety and IT, that the federal government develop a national quality database, build into information systems both integrated decision support systems (DSS) and performance metrics, establish laws for safety/quality reporting, HHS funding for clinical informatics training, improved adverse event detection/ reporting, exchange standards for DSS, and a shared repository for algorithms.
Recommendations for financial incentives include: federal funding for standards, 40-50 new demonstration projects, and a public-private financing vehicle for IT. Also included are investments for local health information infrastructures (HII), payer reimbursement incentives, removing legal barriers to investment, and educating health professionals and consumers.
Consumer health recommendations focus on people as the center of the “virtual health system,” data elements relevant to consumers, a consumer representative on NCVHS, improving consumer health literacy, trustworthy health and disease information, improvements in information access (search tools, linkage) by NLM and the private sector, AHRQ involving consumers in patient safety, progress measures for PHR, and decision support (alerts/reminders) for consumers.
The homeland security goal is collaboration among federal, local, state and private agencies using interoperable, secure, and accessible coordinated platforms; establishing an IT clearinghouse for transferable, scaleable technologies; requiring government agencies to participate in NHII and aligning CDC’s Public Health Information Network (PHIN) with NHII; state and local demonstration projects; and HS funding agencies working in a unified framework for standards.
Research and population recommendations include: a goal of multipurpose data use, standardized research, and population health data; a standard set of patient characteristic linker variables; a national registry of data definitions, datasets and metadata; incentives for data providers to conform to NHII standards and provide data, and a feedback link from researchers to the public to improve personal health decisions.
Presentations and recommendations are posted on the Web. ADDRESS MISSING A summary of the recommendations will be published at the end of August. Dr. Yasnoff reported that the meeting raised interest in many quarters. Within the Department, there was agreement on the need to pursue this vision and numerous discussions about how to proceed. Dr. Yasnoff identified six tracks: the original strategy to inform, collaborate, and convene expanded to include standardize, demonstrate and evaluate. Some $62,000,000 in the President’s 2004 budget was designated for demonstration projects. AHRQ will issue an RFA by October.
Dr. Yasnoff noted a serious problem in misalignment of financial incentives. In essence, providers are asked to invest in systems that benefit others. Any return on investment for individual providers, especially small offices, would be slight or non-existent. Work has been commissioned to examine financial incentives and build an economic model for NHII.
Through the CHI process, the government endorsed and is adopting HL7 and LOINC for internal use. The Workgroup and NCVHS are aware of serious gaps (e.g., the drug terminology and issue of an interchange standard for the full electronic record) and are working towards those as well.
Responding to comments on the need for a standard to transmit the whole EHR, Dr. Steindel noted that HL7 worked for years with clinical document architecture designed for that: mechanisms were in place and, momentarily, there will be a new ballot for the clinical document architecture. He advocated involvement with HL7/CDA, rather than a de novo process. Dr. Yasnoff emphasized the Workgroup’s intent to engage and accelerate existing work done in HL7 and, specifically, CDA, making it more rapidly applicable and adopted.
Dr. Cohn expressed pleasure that CHI worked to evaluate and identify holes, rather than what was not yet identified as a standard. He noted the Subcommittee was looking at drugs and devices. In October, the Subcommittee will discuss claims attachments and begin considering the issue of document architectures.
Dr. Shortliffe said the recommendations clarified that this was more than just using the Internet to support health care: the NHII phrase encompassed the coordinated effort to create seamless and financially viable solutions to problems informatics discussed for decades, recognizing that technologies had changed enough that potential for accomplishing those goals finally exists. Noting the recommendation to educate the public about NHII and HIPAA, he stressed the need for coordination, definition, and broadening community participation. Dr. Yasnoff concurred. Observing that this was a multifaceted, multidimensional activity, he said the challenge as this project gained momentum was for the Workgroup to continue to provide advice and feedback to the Department about direction, strategy, and mechanisms to deal with emerging problems. The Committee’s vision of NHII had gained momentum. He encouraged the Workgroup to add definition to that vision.
Dr. Ortiz noted that recently experts from the government sector, health care organizations, researchers, clinicians and vendors collectively developed themes; one of their strongest recommendations was for more communications and dissemination of information to providers, consumers and health care administrators.
Reiterating that incentives were misaligned, Dr. Yasnoff called for seed money (i.e., the money AHRQ had for demo projects) to initiate this process, capture savings and reinvest in further IT efforts. His goal was to align incentives for IT in the way they were aligned for CT scanners.
Mr. Houston suggested there was a need for dealing with a seventh track: external barriers. In addition to anti-kickback and Stark issues already identified, he noted substantial HIPAA and state law issues. Dr. Yasnoff commented on responses to other barriers: educating senior policy makers, dealing with privacy issues (e.g., bringing together stakeholders and monitoring privacy practices as local areas develop health information infrastructures), and aligning financial incentives.
DISCUSSION OF PROPOSED PROGRESS MEASURES FOR NHII – Kathleen Fyffe
Ms. Fyffe summarized the proposed progress measures for NHII considered at the conference, emphasizing simplicity, qualitativeness, and do-ability. The primary goal was to monitor the nation’s progress toward a fully functioning NHII, rather than measure outcomes or benefits. Measures were divided into macro measures, scope of EHR usage by type of health care setting, and EHR function measures.
Micro measures (the proportion of the U.S. population covered by NHII estimated as “none,” “started.” “early stages,” or “operational” along with the proportion of medical training programs with EHRs for trainees) were indicators of nationwide progress toward the NHII and provider use of EHR. The scope of EHR usage by type of health care setting (estimations such as “none,” “some,” “all”) were indicators of progress according to setting and level of EHR. EHR function was gauged by the percentage of outpatient visits with information complete as an indicator, estimated as “none,” “some,” “all.” Proposed EHR functions included problem list, medications, labs, imaging, history, progress notes, demographics/eligibility, decision support, and patient reminders. Dr. Yasnoff observed that a set of measures was particularly vital in producing the quarterly reports the Secretary requested. Mr. Houston added that it also would be good to have measurement criteria for developing supportive NHII architecture.
Dr. Lumpkin concurred with Mr. Blair’s written comments on using, linking or enhancing the surveys. He suggested that it might be useful to develop recommendations at one of the next two meetings. Cautioning that quarterly reporting could be problematic (the measurement instrument’s precision might not support the process), Dr. Lumpkin suggested recommending to the Secretary a minimum of annual reporting. Noting that these measures focused on the EHR, which was at the heart of everything discussed in relationship to enhancing the NHII, Dr. Lumpkin said the measures should reach out to other dimensions and, especially, to the interconnection to interoperability between dimensions. He emphasized that NEDS implementation was a key component of the population health dimension, whether it be NEDS, PHIN, or another measure of progress in that arena. He also pointed out that immunization registries crosscut between population health and healthcare provider dimensions and that electronic lab reporting crosscut between clinical and public health setting.
Participants noted a lack of viable surveys in the personal and public health dimension, pointing out that, with creativity, questions could be added to existing proprietary surveys looking at the EHR side. Dr. Zubeldia remarked on the need to distinguish between the hub-and-spoke model, where practices were passive, and “true” NHII active peer interconnections. He also emphasized the need to determine how to speed up penetration within environments that officially adopted EHR. Dr. Deering suggested that measuring awareness and readiness to adopt NHII could be a useful proxy in the first years. Dr. Lumpkin noted that a question could be inserted in CDC’s and NCHS’s ongoing phone surveys.
Dr. Ortiz cautioned that collecting this information accurately and completely would be a big challenge. He recommended leveraging the MEPS Data Survey in terms of the home dimension perspective for information on percentages of patients with online access to providers and access to their medical records.
Dr. Yasnoff noted that a goal was to have a representative set of measures with the characteristic of completeness so that, if all measures reached the desired values, it would be likely that they would essentially be done. Emphasizing the inclusiveness sought in the NHII process, Dr. Lumpkin suggested a set of measures that specifically related to the interest of key players. He noted that it could be helpful to hold hearings where stakeholders provided feedback on whether their interest was represented appropriately by the measures and if the measures as proposed would reflect their progress. Dr. Lumpkin encouraged use of CHI and the Data Council to generate measures before engaging in actual agreement beyond the agency.
DISCUSSION OF DRAFT LETTER TO SECRETARY RECOMMENDING INCREASED HHS PARTICIPATION IN NII R&D – Workgroup
Dr. Lumpkin read aloud the letter to the Secretary recommending increased HHS participation in federal interagency IT R&D. Members discussed and edited the draft and voted unanimously to move the letter to the Full Committee as amended.
PANEL - PERSONAL HEALTH DIMENSION
Dr. Lansky presented the conclusions of work accomplished under the auspices of the Markle Connecting for Health Task Force. He identified three considerations in contemplating the shift from the patient as a passive, dependent recipient of health care services to a full information partner in the PHD: first, what is known about public awareness and perceptions of health information, and how to consider the opportunity to mobilize the public as participants in this transformative NHII process, second, the disconnect between investors, who might enable NHII to come into being, and beneficiaries of infrastructure development, and three, the role of the public voice in driving change.
He reported the results of a survey of 1,200 online Americans (a representative demographic sample of the population as a whole). Seventy-one percent of the respondents said a personal health information system would help them understand their doctor’s instructions. Sixty-five percent said it would prevent medical mistakes. Sixty-four percent believed it would give them more control over their care. Sixty-two percent said it would help them ask better questions when seeking care. Sixty percent said it would help them take care of themselves.
Seventy-five percent of respondents already online said they would e-mail their doctor if the capability existed. Sixty-nine percent would track their family’s immunization history. Sixty-nine percent would check their record for mistakes. Sixty-three percent would review test results. Sixty-five percent would send information to new doctors. Dr. Lansky emphasized the challenge as communicators in helping people understand the relationship between obtaining benefits sought and building an infrastructure that enabled such gains along with protections of privacy. Ninety-one percent of respondents expressed concern about privacy of the online information environment, though focus groups conveyed confidence in their experiences with technologists (involving travel and banking) and only 25 percent perceived a barrier to using their online medical record. The survey also indicated that frequent health care users and those facing chronic illness or caring for a family member were likely to be early adopters.
Dr. Lansky said the discussions pointed out that, to the extent there was a business advantage in a health care organization building infrastructure, including the EMR at the provider level, and secondarily providing patient gateway access, there was virtually no perceived advantage in interoperability with competitors. In competitive health care markets, Dr. Lansky saw an enormous challenge in securing funds to invest in community architecture.
Dr. Lansky said the public was ready, but the public voice was not driving the investment and infrastructure development climate. He recommended collectively creating advocates among the general public who understood this broader approach. The Foundation for Accountability, with the support of the Markle Foundation, will host a conference in October of patient and consumer advocacy organizations. The intent is to get a broad group of prestigious, influential consumer and patient groups to understand some of these issues, sparking a dialogue engaging them as leaders and advocates of this process.
Dr. Hammond explained that HHS had commissioned/encouraged IOM and HL7 to create EHR functional standards. IOM piggy-backed the activity into their Patient Safety Task Force. HL7 assigned it to their EHR special interest group.
Sites identified by both groups include hospitals, ambulatory care, and nursing homes. IOM added personal health. HL7 added community care. IOM categories to introduce functionality include: health information and data, results management, order entry/management, decision support, electronic communications and connectivity, patient support, administrative processes, reporting and population health management. HL7 added categories, a normative and informative ballot, and introduced triplets as a management tool that includes a functional statement, rationale, and conformance criteria.
Data elements include demographics, medical problems, laboratory data, vital signs, current/past medications, immunizations, allergies, providers, encounters, procedures, radiology results, level of service, health maintenance, and advanced directives.
Dr. Hammond noted the lack of a common definition of EHR and EHRS; the wide range in background, experience, and perspective (IOM primarily represents providers and academic; HL7 is comprised of vendors, government, organizations, providers and consultants); and the lack of common documentation and terminology.
Mr. Rother conveyed the need to be more personal in how health information was translated to the consumer and said the PHR was the key. He recommended learning from experiences abroad where electronic medical record use was more advanced than in the United States. He noted the strong interest among older people in using the Internet as a healthcare tool. And he emphasized the need to translate the PHR into decision support for the individual. He agreed that the population with the strongest interest was the chronically ill and emphasized the opportunities and need to enable and empower them with better support.
Advising that privacy was a serious concern, but that cost might be the ultimate consideration for the system, Mr. Rother stressed the need for leadership from HHS and the federal government, not only in setting standards, but also in developing financial mechanisms to promote investment.
Emphasizing that the PHD was broader than the PHR, Dr. Overhage noted other aspects of the PHD: access and availability to understandable health information and content for improving patient/provider communication and shared decision making; online or e-mail communication with providers to eliminate misunderstanding, misinterpretation and harm to the patient.
Benefits of the PHR include: capturing day-to-day functional data, increased portability and flexibility for patients to change providers, and opportunities for patients to gain more control of their record and become active participants in decision making, management, treatment of illnesses and their health maintenance.
Challenges associated with the PHR include provider access to a record controlled by a patient and the issue of updated data. Dr. Overhage noted the need for uniform vocabulary, a data model, and technical issues in terms of access, merging, and viewing data. Another challenge was bringing this additional information into a context providers could use and reimbursment for the effort required to incorporate it into the physician/patient dialogue.
DISCUSSION OF OPPORTUNITIES AND PRIORITIES FOR WORKGROUP’S ATTENTION IN 2004, NEXT STEPS - Workgroup/Panel
Dr. Lumpkin thanked the panelists for their opening statements. Noting that the goal of this discussion was to enable the Workgroup to set an agenda for addressing the PHD and make further recommendations to the Department, he shared an anecdote illustrating the gains to be realized by making the patient an equal partner in the health care delivery system.
Stressing the need to convey the value in establishing a level with this draft standard, Dr. Hammond advocated side-bar conversations promoting voting for the standard and identifying what people found difficult, so it could be resolved. Asked if previous agreements between HL7 and X12 stymied implementing NHII, Dr. Hammond confirmed that HL7 was positioned to deal with clinical standards and X12 with business and financial standards. Claims attachments and RIM brought them together at a productive level and there was reasonable cooperation and renewed relationships between them related to RIM, terminology, and claims attachments. There was still competition, but he reiterated that they were moving together. Dr. Zubeldia concurred that the clinical versus administrative was clear, but noted that HL7 would not have an enveloping mechanism for inter-organization messages. The attachment had to be developed with dual syntax and HL7 put into an X12 envelope.
Dr. Steindel noted presenters reported little dissimilarity between information in a traditional EHR (generally institutional focused) and what would appear in a PHR and the PHD. They heard that standards for the PHR should resemble what exists. Dr. Steindel recommended enunciating this clearly, focusing on specific problems between them. Dr. Lansky concurred that there was similarity at a high level of abstraction, but he cautioned that the personal health specification would be difficult to build operationally and in terms of specifications. People’s medication-taking and health behaviors, lifestyle, diet, exercise, symptoms like pain and functional measures (e.g., reported with angina, orthopedic problems or arthritis) were important attributes.
Dr. Steindel said he had heard that they were not looking at different kinds of data but at different terminologies used between various records. Even with consumer health terminology, people reported tremendous overlap in the types of terms and in terms consumers used versus professionals. Where there was no overlap in exact terms, concepts were the same and there was a high degree of synonymy in consumers’ and professionals’ terms.
Dr. Cohn reminded the Workgroup that they were addressing a patient-centered view of the world and suggested a focus on identifying what else was needed to make it all work. Dr. Shortliffe stressed the need to view the difference between the patient and physician dimension.
Recalling that 13 million people were estimated to have a PHR in 1999, Dr. Waggeman noted that the numbers were declining. Currently, the estimate was four-to-five million people. He reported that when Wellmet offered 110,000 people free downloads of data from their PHR only 612 people accepted. Patients and consumers said they wanted two other elements in a PHR. They wanted to know what was happening in the field of alternative medicine. If they went to a chiropractor, they wanted their PHRs to link them. And, if their doctor was not interested in what vitamin therapy they were doing, they wanted this through their PHR. Individuals also wanted a PHR for minor issues that they might not share with their doctor or spouse, but still wanted in their health history, Dr. Waggeman urged the Workgroup to include those additional elements in their consideration about structure and data elements.
Dr. Waggeman reported that a consortium of ASTM, HIMSS, and the Massachusetts Medical Society were creating a continuity of care record and hoped to have a standard ready by 2004. Dr. Deering remarked that one could almost not overstate the importance of research into what consumers wanted, and that another one or two years in-depth research would not be wasted. But she pointed out that health care providers need to move on what they have to do for consumers and patients. The needs were legitimate, and some might be met by functionalities built into the EHR system. She emphasized that both approaches were important.
Dr. Lumpkin reflected that the challenge was whether this was an issue of technology or of new applications. Dr. Cohn suggested gathering information to gauge if they were talking about a PHD connected with providers, who were connected with patients. They could see what functionality providers and software developers valued and issues they had with the standards.
Noting a disconnect between the system offered and what consumers wanted, members recommended consumer research. Expressing concern about clinicians rejecting electronically transmitted health information from other clinicians, Dr. Steindel advocated exploring the issue of trust in electronic information. Mr. Blair emphasized that information gathering needed to be inclusive and diverse so that they did not craft an information infrastructure blind to the non-computer-literate subpopulation.
Describing his personal reasons for maintaining a health record, Dr. Hammond emphasized the need to understand individual motivations for keeping a PHR. He observed that a model was needed to disseminate and promote a PHR. Dr. Steindel said most people who kept PHRs did not yet realize the need to be able to exchange that information with others. Dr. Deering noted an emerging body of research about the use of technology by those presumed to be technologically non-adept. She suggested a panel focused on this work. And she noted that another area mentioned was legal barriers, both real and perceived.
Noting push-back from physicians who felt they did not have time for quality interaction via email or expressed concern about liability if a patient altered the record, Mr. Houston said they needed to provide an efficient way to engage physicians and allow them to decide whether the quality of communication they had with a patient merited continuing that interaction. Dr. Lumpkin said issues of trust and data entry by consumers and developing models for getting this into their hands also had to be explored.
Dr. Yasnoff supported hearings exploring the state of this area and suggested facilitating the availability of information about development of the PHR and monitoring its development. Dr. Waggeman reported that at this point the majority of PHR users turned to it for parents or children, not their own good.
Dr. Shortliffe noted a whole set of research issues either had not been explored or might be suitable topics for hearings. Members suggested creating and maintaining a constantly maintained Web-based inventory of projects underway in the PHD and a self-maintained directory where vendors listed their wares.
Remarking that he was struck by the comment about the adoption of CT scanner technology, Dr. Huff pondered the political, cultural, business, and financial barriers. Noting the cost of sending data to a personal record and pointing out that physicians who put information into the record were reluctant to share with those not willing to bear in the burden of sharing, he asked for the financial incentive. In a sense, he said one “aided and abetted” a marketplace competitor by sharing this information and it was not clear that there was a business advantage. Dr. Huff asked what could be done to overcome that barrier.
Explaining that IHC’s patients could use secure e-mails to ask their physicians questions, Dr. Huff also noted physicians’ concerns about policies, procedures and legal capabilities that would enable them to be reimbursed for professional services in that electronic venue. He proposed holding hearings focused on these business, cultural and financial barriers, how data sharing happened, and how to be legitimately reimbursed.
Dr. Ortiz reported interest in a minimal data set from a patient safety and quality of care perspective and concern that little was happening and what did occur was disparate. He suggested a set of hearings considering what a minimal data set might look like (should there be a standard minimal data set or different versions: e.g., provider, patient, adult, pediatric), efforts underway, and if there is a group to take the lead in developing this type of data set. Dr. Hammond said Connected for Health had emphasized the need for a master data set that defined effectively any and all data elements that one might use. A business would derive whatever data it collected from that master set and could electronically have available what it collected, so that anyone doing business with it knew what was collected. One could negotiate if other elements were needed. Dr. Ortiz reiterated the need for someone to take the lead.
Dr. Waggeman explained that the Continuity of Care Record, designed to be used every time a patient went from one provider to another, contained: demographic information including insurance; patient status, immunization, allergies, medications; the provider’s summary of care provided; and a recommended care plan.
Dr. Lumpkin said the promise of the PHD is to allow the patient to be an equal partner in health care encounters; the Workgroup had spent a fair bit of time developing a framework for how that could be done. Dr. Hammond said the concept of disease registries was an important part of the PHR. Dr. Kambic noted two drivers for a PHR: the genomics database (people will want to look at their genetic risk factors) and an equation for calculating risk analyses or life expectancies (e.g., if one smokes, uses seatbelts or has high blood pressure). Recalling that they had opened this section stating that they would look at the PHD, not just the PHR, but kept sliding back and talking about a record rather then the dimension, Dr. Bower suggested there might be utility in a white paper on the dimension that put the record within context.
Members discussed the following potential activities: a recommendation to maintain a directory of PHR projects; conduct hearings and make recommendations on the research agenda relating to the PHD; conduct hearings and address business, cultural, and financial barriers to participation of providers in developing the PHD; and encourage a personal minimal health information e-document. Dr. Lansky urged the Workgroup to describe an agenda (a set of stages or phases), and then consider where federal agencies could model solutions. He suggested beginning by combining a patient/consumer research strategy (Ven diagrams identifying segments and services needed) with the analysis of business, cultural, and financial requirements.
Dr. Lumpkin said the need for a directory and for developing and supporting a personal minimal health information document, were ready to be drafted as recommendations to the Secretary for review at the November full Committee meeting. Language will be crafted in September. A recommendation on the research agenda could be made after holding a hearing. Dr. Steindel noted that the conceptual model and much in the IOM report on EHR overlapped with the differentiated care categories and could serve as a starting point for developing the comprehensive model.
Observing that in November it would be two years since the original NHII report was issued, Dr. Yasnoff suggested reviewing the recommendations and writing a letter applauding the Secretary for his efforts and highlighting additional things that needed to be done, thus keeping the focus on the original recommendations.
Dr. Lumpkin noted that the Workgroup identified refining and releasing the measures and the updates as other activities for the next year. Noting they had discussed a hearing on the measures, Dr. Lumpkin said feedback was needed from the Department about when that would be most appropriate. It was a matter of getting measures in shape and sharing with internal partners within the Department and federal government before conducting a public hearing.
Dr. Yasnoff pointed out that the discussion of incentives and barriers, which was clearly important to the PHD, was important to all the dimensions. Noting it would be difficult to separate the incentives by dimensions, he recommended considering that issue more broadly in terms of its overall impact on NHII. Dr. Lumpkin responded that there were unique barriers related to PHD; addressing development of the EHR fell within the Standards and Security Committee’s preview and the issue of barriers probably needed to be discussed within that venue. He noted that many pertinent and timely issues related to race and ethnicity and ultimately it would probably be more appropriate for the Population Subcommittee to gear up and address a lot of issues related to the population health dimension. At some point after the Workgroup looked at pieces of the barriers within the three dimensions, the Committee needed to approach this in a methodological fashion.
FUTURE AGENDAS
The following topics were mentioned for the forthcoming meeting:
Drafting a letter and recommendations to the Secretary about the need for a directory and for developing and supporting a personal minimal health information document for review at the November full Committee meeting.
Dr. Lumpkin then adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/ John R. Lumpkin 0/30/03
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Chair Date