Minutes of December 16, 1999 NCVHS Workgroup on NHII Meeting

12/16/1999

Public Health Service

National Committee on Vital and Health Statistics

Workgroup on National Health Information Infrastructure

December 16, 1999

Washington, D.C.

- Meeting Minutes-


The Workgroup on National Health Information Infrastructure was convened on Thursday, Dec. 16, in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:

Committee members

  • John R. Lumpkin, M.D., M.P.H., Chair
  • Jeffrey S. Blair, M.B.A.
  • Daniel J. Friedman, Ph.D.
  • Barbara Starfield, M.D.
  • Kepa Zubeldia, M.D.
  • Absent: Richard K. Harding, M.D.
  • Clement J. McDonald, M.D.

Staff and liaisons

  • Mary Jo Deering, Ph.D., ODPHP
  • Steve Steindel, Ph.D., CDC
  • Marjorie Greenberg, National Center for Health Statistics (NCVHS), Executive Secretary
  • James Scanlon, ASPE, (NCVHS) Executive Staff Director

Others

  • Jackie Adler, NCHS
  • Cynthia Baur, Ph.D., ODPHP
  • Leslie Hsu, M.P.H., ODPHP
  • Wayne Brandes, M.P.H., Preventive Medicine Resident
  • Maureen Williams, Special Assistant to ASMB
  • Henry Heffernan

ACTION ITEMS

  1. Following an in-depth discussion of draft chapters, a revised outline was approved for the dimension report and a tentative production timetable agreed upon. It was decided to have a draft vision document ready for the full committee meeting in February.
  2. Following comments from the February meeting, the report will be expanded and refined it in time for the June meeting.
  3. The June 20, 2000 symposium will coincide with the 15th anniversary symposium at The National Academy of Sciences and it was agreed that it would be an auspicious moment to launch the NHII vision report.
  4. After a group discussion, it was decided that the writing of the vision document would be a collaborative effort between members of the committee and a researcher and writer team who would craft the final draft for presentation in June.

EXECUTIVE SUMMARY

Dr. Lumpkin initiated a discussion of the dimension documents by stressing the importance of timing its release to achieve maximum impact in the public sphere. He suggested it was critical to use the first half of 2000 to refine and hone the document with the idea of releasing a final version in June 2000 to coincide with the 15th anniversary symposium of the National Academy of Sciences.

Privacy concerns were articulated and the committee reached a general consensus to use the unveiling of the National Health Information Infrastructure (NHII) to try and build on the momentum of the Institute of Medicine?s blockbuster report on medical errors by supplying both a rationale for HII and by showing how its various dimensions could improve the quality of individual and community based health care.

The group also discussed the target audience for the report. It was decided that in addition to the U.S. Congress and the Department of Health and Human Services, the committee also needs to make the report relevant to state and local health care agencies, providers, practitioners and the medical consumers who will make most use of the data base.

Several members mentioned the importance of getting input, comments and criticism early in the writing process, so as to minimize objections and negative feedback later on.

DISCUSSION OF THE DIMENSION PAPERS

The discussion began by trying to articulate the three groups most directly served by the NHII: the individual, the caregiver and the community. Privacy issues were aired as was the necessity to make the system accessible to all three target groups.

Dr. Lumpkin articulated a common theme when he said that consumers want to be more involved in medical decision-making, but so far lack the tools to do so intelligently. He said the NHII could help by rating care providers and by anticipating patients? concerns for privacy as they create their own personal electronic health record. The public health system will also be heavy users of the NHII, Dr. Lumpkin said, because they will be able to use the data base to track infectious diseases more closely and to warn at-risk populations about toxins in their local environment or workplace. Experts working on bio-terrorism and other health epidemics need access to accurate information and they need it delivered quickly so as to counteract these perceived or real public health threats, Dr. Lumpkin said.

Ms.. Greenberg and others debated the timing of the release of the NHII document, given the lame-duck status of the current administration. Committee members expressed the hope that the two key presidential nominees would sign on to the NHII when it is unveiled in June 2000.

The committee envisioned the report as having four or five major sections, with the committee taking primary responsibility for the first three. These sections were broken out roughly as follows:

  • Why do we need the NHII
  • What will it do?
    • a. for the patient
    • b. for the caregiver
    • c. for the provider
  • What kind of laws, standards, national data models, infrastructure for trusted authorities are needed to implement the NHII and to insure privacy and security?
  • What is the role of HHS and
  • What is the role of other players in bringing about this vision?

Ms. Greenberg and Dr. Deering suggested holding a series of public hearings to generate support and interest in the local press and to promote a dialogue beyond the presidential candidates.

PRIVACY ISSUES

Public wariness of what might be seen as yet another huge government database was discussed by Dr. Friedman and others, as was the issue of how best to guarantee the privacy of the individual identifier. Dr. Friedman warned of a potential backlash when the NHII is unveiled unless these issues are dealt with adequately.

Dr. Lumpkin said if the government will not be issuing the unique identifier to individuals, the NHII has to answer questions about who will be the trusted authority doing this job. What will the government?s role be in defining and regulating the agency involved in issuing the unique identifier and how best to protect patient information are key questions for the committee.

Ms. Greenberg mentioned that the Feb. 25 meeting of the privacy and confidentiality subcommittee will take up the issue of health data on the Internet and suggested that that meeting would be a good place for the NHII to initiate a dialogue and raise questions about how it would set up safeguards. Dr. Deering suggested sending a representative to the Feb. 25 meeting to share information.

DISCUSSION OF SPECIFIC DOCUMENTS

Dr. Friedman said the documents need to spell out more carefully how the various sectors -- personal, caregiving and community view data -- relate to one another. Dr. Lumpkin said these points are addressed most directly in the caregiver document when it talks about information capture, storage, processing, and presentation. He used an example about an Illinois cancer registry study to show one possible application of how the data base could work as a cross-reference tool between the public health and personal view sectors.

Discussion ensued about whether the NHII was a ?push,? ?pull? or ?handshake? technology or a combination of all three. Members seemed to agree it could work in all three modalities. References were made to existing and emerging technologies on the Internet and it was agreed that the NHII?s ability to anticipate and incorporate new technological innovations was key to its viability.

Dr. Lumpkin said the NHII system will allow the individual to define the scope and depth of his or her individual health profile and to decide to what degree of sensitivity they want their own system to respond to.

Mr. Blair said it was important to show potential users ?multiple paths? for accessing the total infrastructure. Discussion followed as to whether to hire both a research assistant and a writer to work with the committee on a final draft for the June 20th symposium.

Editing of the personal dimension paper with committee members encouraged to make marginal notes and additions.

Dr. Friedman noted the caregiver and community health dimensions needed to be made consistent with the personal health view as they were written at different times. Other suggestions on editing and tightening included:

  • A need to mention quality of care in all dimensions.
  • A need to explain how consumers would be able to access relevant studies measuring and rating care in a given community by doctors, hospitals, clinics and other providers.
  • Discuss access to health information and general and therapeutic recommendations.
  • Convenient access to high quality, trustworthy health and wellness education resources, including quality of physicians and other providers.
  • A need to further elaborate possible secondary uses/users of data in the NHII and to discuss privacy guarantees even when personal data is de-identified.

Discussion of Implications of NHII

Mr. Blair said ideally the NHII will collect and distribute -- or make accessible -- data from numerous public and private sources, from private patients? records, and voluntary surveys and present it in a meaningful way to consumers.

Dr. Deering noted that by the end of the decade people will be voting from home, from public libraries and from other designated community sites. She said the implications of the Internet for medical data acquisition and online health surveys and support are tremendous. Dr. Zubeldia agreed and noted that people already fill out surveys online and assume they are secure when they do so.

A discussion about the definition of ?caregiver? ensued and it was decided not to limit it to legal guardian or personal physicians, but to anyone in a caregiver role. However, it was emphasized that to gain access to private medical records a family caregiver would still need patient authorization.

Public Health Information Storage and Privacy Issues

Discussion followed about how best to define, store and retrieve core health data. Dr. Steindel focused on ways public health system data could complement the personal dimension, and Dr. Lumpkin used a Venn diagram to show the interconnectedness of various record storage systems. Dr. Lumpkin said the vision document should describe various storage options without ruling out any particular storage technology because it may not seem believable to consumers or it could be quickly overtake by new developments.

Corrections and Comments to the November 9, 1999 Community Health Dimension

Jeffrey Blair submitted the Nov. 9, 1999 corrected version for further comment. Several minor linguistic points including the decision to refer to CDC, ARC, AHCPR, and the VA as ?federal agencies,? were agreed upon. Some word choices were deferred such as how best to label a patient?s encounter with the health system at any level. ?Episode,? ?visit,? ?encounter? were all considered and deferred as was ?health-care oriented.?

Dr. Lumpkin made the point that medical data -- whether community or individual -- will continue to be stored where it is now. The NHII will make it easier for a variety of users to access and retrieve the data.

Mr. Blair noted that Congress is currently drafting legislation to guarantee a patient?s right to view their complete health record. Blair said events in Congress anticipate a caregiver record system such as that envisioned by NHII.

The January 2000 meeting

Discussion followed about the January 2000 conference at which time the work group will have an 90-minute presentation. Presenters discussed their roles. Discussion then turned to a draft outline of the final document circulated by Dr. Deering.

Dr. Lumpkin suggested the document needed more detailed description about currently existing technology and how the NHII would dovetail and expand its architecture in a larger information infrastructure.

Dr. Brandes said the document has not taken into account the concerns of administrators and others who would be financing the system. Dr. Deering said: ?historically people have recognized that it has been the administrative dimension that has driven all the discussion of automation and health informatics...? She identified pro and con sides of the argument and said ?the billions of dollars of investment lurking out there are all around the payor and the administrative sides of it. We don?t want them not to see themselves in this.?

Dr. Steindel said administrators at HHS are already doing tremendous work to compile and ready requirements of HIPPA. To add to their burden at this time may not be wise, he said.

A Tentative Outline Emerges

Dr. Lumpkin reviewed the revised outline as it emerged from the morning and afternoon sessions. It included roughly:

  • Introduction on the need for and purpose of NHII and what will enable it.
  • What will it do? Include three dimensions and some of the functions. Discuss current and needed new technologies.
  • Under the section describing what NHII will do, add the dimensions, the functions, knowledge management and decision support.
  • What is needed to enable NHHI: infrastructure, laws, regulations, standards, policies, and practices.

Dr. Lumpkin said the June 2000 presentation would elaborate the roles of HHS and various other agencies. A discussion followed about data models, including the Australian one and X-12 and HL7. Then discussion moved to privacy issues and where privacy considerations fits in the overall document under policies and law and practices and security.

It was agreed to include background information about the history of NHII and the President?s information infrastructure initiative of 1993 as a way to set the stage..

Ms. Hsu described the website proposed a few months ago and walked people through it. He asked for more ideas about materials to be included and for feedback on the site?s operation.

Dr. Lumpkin said eventually the committee can post its own papers and presentations, the Power Points and then reference various electronic records. So far the site includes: a bibliography, access, code sets, electronic health records, international activities, national information infrastructure, privacy and confidentiality issues, standards development and telemedicine projects. There are several links to Canada, the G7 and to Australia. The telemedicine link goes to the American Telemedicine Association and needs to be linked to NCVHS documents.

Dr. Lumpkin closed the meeting with an appeal for members to get their responses to Ms. Hsu.


DETAILED MEETING SUMMARY

CALL TO ORDER

Dr. Lumpkin called the meeting to order.

DISCUSSION OF TIMING OF NHII REPORT AND INTENDED AUDIENCE

In opening remarks Dr. Lumpkin stressed the importance of having a draft of the NHII vision document by the February meeting which can then be discussed and revised for presentation at the meeting of the full committee June 20, 2000. The timing of the presentation would coincide with the 15th anniversary symposium at the National Academy of Sciences. Dr. Deering stressed the importance of remaining open to advances in technology so as to keep report timely and future oriented.

A discussion ensued about the intended audience(s) for the NHII report. Dr. Greenberg and Mr. Blair said policy makers in Congress and in the Department of Health and Human Services are one key audience as their leadership will be needed to build a public consensus for funding the national health information infrastructure. Mr. Blair said HHS will need a concise, accessible version of the project in order to build public support for it. Knowledgeable members of the general public are another audience. Dr. Zubeldia said community health practitioners: state and federal agencies, schools, providers, legislators also must be able to understand and use the vision document.

Dr. Deering mentioned the timing of the document?s release given the current presidential election cycle and the fact that it will be March or April of 2001 before the incoming administration will be ready to launch a new, key initiative. She suggested by then support for the NHII document might be able to piggyback on momentum already building from new privacy regulations and legislation addressing concerns about medical errors.

Dr. Lumpkin said the document is liable to be controversial but only among people who already know something about the subject and not in the immediately explosive way the Institute of Medicine?s report on medical errors was. He said the committee might look at the process of generating an NHII vision document in two parts: the June meeting where a document is circulated that describes the problem conceptually, and the hearing that solicits feedback and gets recommendations from those most likely to be involved in implementing the NHII project.

Dr. Lumpkin also raised privacy concerns and asked committee members what kind of safeguards would need to be in place for a public or private entity to become a trusted repository for personal medical records? He mentioned that there are already charlatans putting up websites they claim are secure and marketing information on them to consumers. He said beyond describing what needs to be done, a portion of the document must anticipate and spell out the legislation or regulations that Congress or HHS will need to implement the kind of secure system the committee has described and believes is needed.

Dr. Starfield said during the first half of 2000 the committee needs to develop basically an IOM-style report on why this sort of coordinated information structure is even needed. He said he thought it possible to build on the IOM report on medical errors and to document why we need the NHII project. ?But we have got to lay it out so it is pretty dramatic, because otherwise we?ll have a solution without the problem.?

Dr. Friedman concurred and said he was concerned the idea could become ?roadkill? unless the case for why NHII is needed is laid out thoroughly and positively. Friedman suggested that soliciting criticism and comments ?early in the process rather than later,? was one way to avoid having the whole idea sandbagged, which he thought a ?real possibility.?

Dr. Lumpkin said comments could be solicited from a broad group once the document receives approval from the whole committee in February. That input would then be used to refine the document by June. Among questions to be considered: is this what we need and why? And what about this proposal worries you?

Discussion on Dimension Papers

Building on Dr. Starfield?s earlier remarks, Dr. Lumpkin divided the issues into three categories. The first -- why do individuals need this system? -- he went on to answer by saying consumers want to be more involved in medical decision making, but currently they do not have the tools. Patients want to be able to rate the quality of their care providers and providers want to be able to offer better care by anticipating patients? needs and concerns. He said there is clearly a problem when patients trust an anonymous Internet source more than their family doctor. Lumpkin said the NHII vision paper needs to use concrete examples to document this quest by patients for more information and control over medical decisions affecting their lives.

The second perspective is that of the caregiver, who wants access to more support networks. Both individual health consumers and caregivers want privacy protections even as they search for more advanced medical decision-making tools and support, Dr. Lumpkin said. The third perspective is that of the public health system. Experts working to prevent bio-terrorism and/or other major health threats need access to more accurate information, delivered more quickly so as to enhance the public health response, he said.

Mr. Blair said the working group?s conceptualization of what is needed in NHII has moved well beyond the 18-month landmark IOM study done in 1991 which said medical records universe could be divided neatly between a patient-based medical record and the technology needed for a national health care system. He said by coming up with three dimensions of a national health infrastructure and naming it an ?infrastructure,? the committee became the first organization to ?step forward and say here is a broader, more comprehensive vision than that set forth 10 years ago.? Defining what is meant by an ?infrastructure? for all of health care is more difficult to convey to the public because it involves: standards, technology, people working together, laws, and privacy issues, Mr. Blair said.

Ms.. Greenberg said bringing the recommendations to the CPR in June is very good timing, because even as the current administration is headed for lame duck status, the department and the Data Council want to project a legacy even if neither agency has the opportunity to fully implement the proposal.

Dr. Lumpkin said he thought it was possible to get both some attention when the proposal is unveiled in June and then get some more attention from the incoming Secretary of HHS when the final report is submitted. He said hopefully the two key presidential nominees will sign onto the NHII when it is unveiled in June.

Dr. Lumpkin envisioned the report as having four or five sections, with the committee doing the first three. He broke them out roughly as follows:

  • Why do we need it?
  • What will it do? (Spelled out in three subsections: for the patient, for the caregiver and for provider)
  • What kind of standards, national data models, infrastructure for trusted authorities are needed to implement it and to ensure privacy and security?
  • What is the role of HHS and
  • What is the role of other players in bringing about this vision?

Dr. Lumpkin said the last two categories would be the focus of the June to winter 2000 time frame. Once they are finalized, they would become the recommendations.

Dr. Deering said it would be important to use the June presentation as a springboard to draw attention to the NHII. She and Ms. Greenberg suggested holding public hearings to generate interest in the local press and to promote dialogue beyond the presidential candidates.

Dr. Starfield and Dr. Friedman raised the question of the timing of the health statistics vision hearing and the NHII. They wondered if the two projects should dovetail both in terms of how they complement each other and in the effort to get the message out to communities outside the Washington Beltway.

Dr. Lumpkin agreed the health statistic vision adds to the community dimension and said he sees the recommendations on privacy and confidentiality forming an appendix in the final document, along with appendices on standards, the computerized patient record and the 21st century.

Privacy and Other Issues

Mr. Blair brought up the need to look beyond the committee?s current vision to focus on the sweeping legislation needed to protect the privacy and confidentiality of health care information. He recommended getting input from Kathleen Frawley, Richard Harding and/or Bob Gellman, none of whom was present.

Dr. Lumpkin said the role of the security piece is to enable privacy and confidentiality and these communities need to interface with each other and to determine how all three components can function in this system.

Dr. Friedman identified two potential areas of vulnerability for NHII in the public?s eye: the idea of another huge government database and the issue of the individual identifier. He said the committee needs to be prepared for a potential backlash when the NHII is unveiled in June.

Dr. Deering said that what we are looking at ?goes well beyond a systematic, top-down, inside-out system of health information.? She said people are voluntarily putting their health information on-line and that technology may very well help us convey the committee?s message if the message is carefully calibrated.

Mr. Blair responded to Dr. Friedman?s concern and said it may be possible to present the NHII as a vehicle for comprehensive privacy and protection of health care information as a way of undercutting some of that concern.

Dr. Lumpkin raised the question of the unique identifier. Since the government will not be issuing it, he asked who will, and what will government?s role be in defining how the identifier is created, how it functions and how it will be protected? He said the document needs to be fairly explicit about where the data will be collected and where it will be kept and to point out that the new system will provide greater protections in a sharable environment.

Dr. Greenberg mentioned that the Feb. 25 hearing of the privacy and confidentiality subcommittee will take up the issue of health data on the Internet and suggested that venue would be a good place for the NHII to project a presence, to initiate a dialogue and to raise questions related to safeguards.

Dr. Deering said perhaps the chair should consider sending a representative to the Feb. 25 hearing as an unofficial way to share information. Others agreed this might be a good strategy to elicit early input and hopefully avoid surprises and negative feedback later.

Committee Discusses Specific Documents

Dr. Friedman said co-workers with whom he shared the documents informally said they would need more specific discussion about how various sectors -- caregiving, the community health sector view data and personal view data relate to one another. These readers said they could not evaluate the concept until they understood it better.

NHII: A Push-Pull Technology

Dr. Lumpkin said the caregiver document addresses most of these issues when it talks about information capture, storage, processing and presentation. He said amplification may be needed as well as better linkages to sections in other documents with similar content. He gave a futuristic example from what he called the migration study of Illinois? cancer registry, which looked at people who were born in the South and who then migrated to Illinois. The study used Social Security numbers to track them and compared various cancer rates for those who grew up and stayed in Illinois with those who migrated to the state, presuming lifelong exposures to different toxins. If this kind of information was tracked and shared by the NHII, then workers in various industries could have a personal health view and be alerted to get more regular check-ups because of exposure to asbestos or other specific toxins known to exist in their work environment.

Dr. Steidel agreed this kind of interaction between the community health sector and people who share the identified health profile should happen, but said it may not be possible if personal views are lying in disparate data storage areas. He called it a pull technology where a patient with a particular exposure could pull down information from diverse community health profiles.

Dr. Lumpkin said the NHII could function as both a push and a pull technology. For example, someone who grew up around a Superfund site, may get a health alert about a potentially significant exposure they had as a child when they do a routine check for cardiovascular disease.

Dr. Zubeldia added there could be ?double linkage? when a community health dimension discovers something and then alerts everyone who has been in contact with them over a certain period.

Dr. Steidel said one recommendation for the implementation technology should allow for this type of communications between various personal and community health dimensions.

Dr. Lumpkin said the challenge will be to anticipate technological changes that may impact on the implementation of the NHII and to put it in the vision document in such a way as to capture peoples? imaginations and so individuals can see the potential impact of the system.

Ms. Williams said there are companies looking at building this sort of technology, but the linkages aren?t there and they are ?very afraid? of what may be coming in terms of regulations.

Dr. Lumpkin said part of that fear is peoples? concern ?that somebody is collecting data on me. What we are really talking about is enabling people to collect data themselves, either through a personal repository or through a trusted authority.?

Dr. Greenberg asked whether caregivers might not also be concerned that consumers would collect all this information on their own and then overload the health care system by saying, ?I think I?m at risk for this or that.?

Dr. Lumpkin said the system will allow the individual to define their personal health dimension and what data they see and decide what degree of sensitivity they want their system to respond to. There will be filtering devices, much like a hypertext page. The person who wants more detail ?can start mining down into their own personal health information,? whereas the average person may just learn it is time for an annual PAP smear.

Several participants (Starfield, Zubeldia and Greenberg) agreed there is a lot of interest in being able to look at places where people have lived and to get a printout about possible things to be concerned about and the relative risks depending on personal health profiles.

Ms. Greenberg urged the committee to discuss in more detail the timetable necessary to produce a fleshed-out document in time for the June symposium.. Discussion followed as to whether the best approach was to make the case in writing for why each dimension -- individual, caregiver and community -- has validity and needed to be done, or to use a more global approach.

Mr. Blair said in summary: ?we need to show multiple paths for people to get into the total infrastructure? depending on their needs and their interests. But the key, Ms. Williams said is to keep the department from being compartmentalized.

Discussion followed as to whether to hire a research assistant and a writer or to combine the roles. Dr. Deering said staff had assembled a dummy of the website, including a bibliography of materials that make the case for why this total infrastructure is needed.

Dr. Lumpkin began with the personal dimension paper and asked members to note additions and suggestions in the margin so they can be crafted into future revisions. He asked for comments.

Dr. Friedman noted the caregiver and community health dimensions were written at a later stage than the personal health view and need to be made more consistent, more parallel with each other.

Dr. Starfield said the relationship between the personal health view and the community health view needs to highlighted along the lines of the morning discussion. Other suggestions included:

  • A need to mention quality of care in all dimensions.
  • A need to point out how consumers would be able to access studies measuring and rating care being given by local providers, hospitals, doctors.
  • A discussion of access to health information and general and therapeutic recommendations.
  • Convenient access to high quality, trustworthy health and wellness education resources, including quality of the physician and other providers.
  • An ability to hone specific quality measurements to specific patient requirements, i.e., the best health plan/facility in a geographic area for treatment of childhood asthma.
  • The community health dimension could identify hospitals or nursing homes where something has gone wrong, as part of its regulatory function and pass that information along to health consumers. Whether or not a facility is certified by NCQA may be part of this national or local community health profile.
  • A need to stress that health consumers will be able eventually to access a vast library of resources and information, and to personalize it as they see fit.
  • A need to further elaborate possible secondary uses/users of data in the NHII and to discuss privacy guarantees even when personal data is de-identified.

Discussion of Implications of NHII

Mr. Blair pointed out that ideally the NHII will collect and distribute -- or make accessible -- data from numerous public and private sources, from private patient records and voluntary surveys, and present it in a meaningful way to consumers.

Dr. Deering said by the end of the decade many people will be voting from home, from public libraries or from other convenient Internet sites. She said the implications for medical data acquisition and online health surveys are tremendous. Dr. Zubeldia agreed and said people already fill out surveys on the Internet for professional magazines, meetings and other resources and they presume the information is secure when they do so.

A discussion ensued about the need to broaden the definition of the word ?caregiver? to encompass anyone who offers health support: family, friends, so as not to be limited exclusively to physicians or legal guardians. To gain access to a family member?s medical record, caregivers would still need patient authorization.

Public Health and Privacy Issues

Further discussion revolved around the need to define core data and the best means for storage and retrieval of this health care information. If a person with an infectious disease moves, how will public health officials in the new community be informed? And what about building in the capacity to detect potential adverse reactions between two or more drugs? How best to relay this information with an eye towards preventing future dangerous interactions?

Dr. Steindel brought up the question of individualized personal health data would be kept, how it would be stored. He said it could be on a personal smart card, in a home computer, in a file folder or with a trusted authority. Sometimes the public health system?s data would overlap and complement the personal dimension.

Dr. Lumpkin used a Venn diagram to show the interconnectedness of various record storing systems. If a person has a communicable disease like measles, that information would be more widely disseminated than if someone is being treated with an anti-depressant or HIV. Dr. Lumpkin said the final vision document should not get tied down describing any particular storage technology because it may not seem believable to consumers now, or it may be quickly overtaken by other technological developments.

The Community Health Dimension

Dr. Lumpkin said the November 9, 1999 version has been corrected by Jeffrey Blair and asks for comments.

On a recommendation by Dr. Deering, the phrase introducing all the bullets is amended to read: ?The improved access of public health professionals to accurate and timely information will support studies to improve the population?s health.?

There is a discussion about whether to list all federal agencies, like CDC, ARC, AHCPR and the VA and new acronyms. The decision is made to just say ?federal health agencies.?

A discussion ensued about the last section and privacy, confidentiality and security concerns. It is agreed the first two bullets need fleshing out and better definition in the

prose version. A question about the system being ?encounter-oriented? and what that means is raised. Mr. Blair says the 1991 IOM meeting ran into the same word choice difficulty, i.e., whether the word is ?episode,? ?visit? or ?encounter,? they all have ambiguous definitions. ?Health care oriented? is suggested, but final word choice is deferred until the work on the definition of terms section.

A separate discussion evolved around how best to describe how the caregiver dimension benefits and complements the community and personal health dimensions. It is decided: ?The data shared by the caregiver will augment the community health dimensions, and the data shared by the caregiver will augment the personal dimension,? following suggested phrasing by Dr. Friedman and Dr. Zubeldia.

A related discussion takes up the issue of how to describe the community dimension data collected at various health care sites. For example: at an acute care facility, an ambulatory facility, a mental health clinic, all of which are visited by the same patient. A core patient record is maintained but it is added to each time a patient visits a health provider and becomes part of a larger community dimension data base, even as privacy concerns are honored.

Dr. Lumpkin underlined that the medical data -- whether community or individual -- will continue to be stored where it is now. What the NHII does is to make it easier for people who need or want to access the data to do so provided they are authorized to view it.

Mr. Blair brought up the fact that some laws are currently making their way through Congress which would guarantee patient?s access to their complete medical record. He said this devilment in Congress anticipates a caregiver record similar to that envisioned by the NHII.

Dr. Zubeldia explained that while the personal patient record will become part of the caregiver dimension, the patient can only access their own data within the larger community or caregiver dimension.

The January Meeting

A brief Discussion of the January conference at which the work group will have a 90-minute presentation of the NHII ensued. Then Dr. Lumpkin turned discussion to the final document and focused in on the knowledge management and decision support components. Dr. Deering circulated an earlier document outline.

Dr. Lumpkin said the document needs some description of currently existing technology and how NHII would dovetail with and expand its architecture in a larger infrastructure. He suggested this discussion of technologies include knowledge management and decision support.

Dr. Brandes said great decision support and electronic health records are not being used widely in an integrated fashion today because the standards, laws and infrastructure to enable them is not in place.

Mr. Blair and Dr. Deering agreed to take the lead in trying to describe the categories of standards needed to enable the NHII infrastructure and on populating the standards section.

Dr. Brandes said the document outline has not taken the needs of administrators or payors, ?the people who are going to pay for all these technologies,? into account to date.

Dr. Deering added: ?historically, people have recognized that it has been the administrative dimension that has driven all the discussion of automation and health informatics.... So the pro side of that, of not teasing it out, is to make it clear that this is no longer driven by payment for health care services. The con is as Wayne said, the billions of dollars of investment lurking out there are all around the payor and administrative side of it. We don?t want them not to see themselves in this.?

Dr. Steindel said administrators are currently undergoing tremendous work, readying requirements of HIPPA. To add this to their burden may not be wise.

Dr. Lumpkin said as this piece develops, there need to be a description of the personal and the caregiver dimensions. In computer lingo this means a hook that grabs financial information on the personal side and hooks that can grab and exchange information on the caregiver side. He said administration will be mentioned, ?they will get their due, but they ain?t getting their own Venn diagram.?

A TENTATIVE OUTLINE

Dr. Deering and Dr. Lumpkin go over the revised outline emerging from the morning and afternoon discussions. Roughly, it is as follows:

  • An introduction which talks about the need and purpose of NHII and what will enable it.
  • Under what NHII will do include the three dimensions, as well as some of their functions. The only discussion of technology will occur under what is needed to enable it, will be current and needed new technologies to enable those functions.
  • Under the section describing what NHII will do will be the dimensions, the functions, knowledge management, decision support;
  • This would be followed by what is needed to enable it: infrastructure, laws, regulations, standards, policies and practices.

Dr. Deering said the respective roles of HHS and others will be elaborated after the June 2000 presentation, to which Dr. Lumpkin added that by defining the laws, regulations, standards, policies and practices, ?we will pretty much get into what HHS needs to do and what the SDOs need to do to enable those.?

Dr. Lumpkin initiated a discussion of data models by saying: ?I just don?t think they fit.? A discussion of the HL7 reference information model as the basic model of all health care processes ensued. Mr. Blair said it remains to be seen whether the HL7 can be used for other purposes.

Dr. Zubeldia said there is an equivalent X-12 data model for transactions and the NCDPP has a model for pharmacy.

Dr. Lumpkin said the reason for say an Australian data model is so everybody has a reference; so everyone is speaking from the same dictionary. But he said the NHII is approaching it totally different than Australia and began to list what should be in the data dictionary: ?Privacy, confidentiality, verification those I think we have handled.?

Dr. Deering asked whether the paper should still include a history of NHII activities and, if so, where. Mr. Blair suggested the section be entitled ?background,? and include as Dr. Deering had mentioned: the high performance computing act of 1991, the President?s information infrastructure initiative of 1993, international efforts, HIPAA, the concept paper and the work group.

Dr. Steindel and Dr. Lumpkin agreed this section is very important as it sets the stage for the NHII document.

Dr. Hsu said that the website proposed a few months ago is now operational as is a listserve for the working group. The website includes a bibliography and lists different reports, resources, and programs. He suggested the website will be for the public and that it could be more informative once more papers and reports generated from the work group are posted. He asked for feedback on the website?s operation.

Dr. Lumpkin and HSU said eventually the committee can post its presentations on the website along with the Power Points and then reference the electronic health records. He said this should be part of the NCHVS? site. So far the site includes a bibliography, access, code sets, electronic health records, international activity, national information infrastructure, national health information infrastructure, privacy and confidentiality, standards development and telemedicine breakthroughs. Each links connects to another set of links on international activity, for instance with Australia, Canada and G7. The Telemedicine link goes to the American Telemedicine Association and now it needs to be linked to NCVHS documents.

Dr. Lumpkin closes the meeting with another appeal for people to get their responses to Dr. HSU.

I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.

/s/ John R. Lumpkin, M.D. 6/14/00

______________________________________________________

Chair Date