Minutes of the January 11, 2001 NCVHS Workgroup on National Health Information Infrastructure and Workgroup on Health Statistics for the 21st Century Joint Hearings

Public Health Service

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

Joint Hearings of the Workgroups on:
National Health Information Infrastructure and
Health Statistics for the 21st Century

January 11, 2001

Washington, D.C.

- Minutes -

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The Workgroup on National Health Information Infrastructure and the Workgroup on Health Statistics for the 21st Century of the National Committee on Vital and Health Statistics, held hearings on January 11, 2001 at the Loews Hotel at L’Enfant Plaza in Washington, D.C.

PARTICIPANTS:

NCVHS Committee Members:

• Kathryn L. Coltin, M.P.H.
• Daniel J. Friedman, Ph.D., Chair, Health Statistics for the 21st Century
• Marjorie Greenberg, Executive Secretary NCHS
• Richard K. Harding, M.D.
• Eugene J. Lengerich, V.M.D.
• John R. Lumpkin, M.D., M.P.H., Chair NHII
• Edward H. Shortliffe, M.D.
• Kepa Zubeldia, M.D.

Staff and liaisons:

• Mary Jo Deering, Ph.D., OPHS, Lead Staff
• Jacqueline Adler
• Debbie Jackson, NCHS
• Katherine D. Jones, NCHS
• Steve Steindel, Ph.D., CDC
• Rob Weinzimer, NCHS

Participants:

• Delton Atkinson, MSPH, MPH
• Michael E. Bird, MSW, MPH
• David Brin, Ph.D. (Written notes were submitted)
• Paula Bruening
• Thomas A. Burke, Ph.D., MPH
• Bette-Jane Crigger, Ph.D.
• Amitai Etzioni,
• Gilbert Friedell, M.D.
• Anjum Hajat, MPH
• Ed Hunter, NCVHS
• Brett Kay
• Alana Knudson-Buresh, Ph.D.
• Nancy M. Lorenzi, Ph.D.
• Richard R. Nugent, M.D., MPH
• Lee Rainie
• Kathryn Wilber
• Armin Weinberg, M.D.

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MEETING SUMMARY

EXECUTIVE SUMMARY

The Workgroup on Health Statistics for the 21st Century and The Workgroup on National Health Information Infrastructure of the National Committee on Vital and Health Statistics met on January 11, 2001 at the Loews Hotel at L’Enfant Plaza in Washington, D.C. The groups received 15 presentations and talked with 4 panels.

Introduction to “Shaping a Vision for 21st Century Health Statistics”

Dr. Friedman explained that NCVHS, NCHS and HHS Data Council had been developing over a couple years a vision and strategic plan for health statistics. Based on insights from commissioned papers, discussion groups, and a National Academy workshop, the group developed their interim report and, for six months, had received feedback via regional public hearings. Dr. Friedman said this fourth and final hearing sought further advice and specific suggestions from stakeholders and professional associations; as well as feedback on: confidentiality, privacy issues and health statistics; current issues such as the role of informed consent in health statistics; and technical matters such as privacy and small numbers, cell size suppression, and releasing public health data to researchers.

Introduction to “Toward a National Health Information Infrastructure”

Dr. Lumpkin began by describing what the National Health Information Infrastructure was not: NHII was not a national database nor a technology. He said the Workgroups were striving to chart a direction for health information development in which data truly became information that could enable individuals to become full partners in tending to their healthcare, improving each individual’s health and the health of the nation. The next step was to identify barriers to realizing this vision, define short- and long-term steps and recommendations for the incoming Secretary.

Perspectives on Privacy and Confidentiality

• Lee Rainie, Pew Internet & American Life Project
• Paula Bruening, Center for Democracy and Technology
• David Brin, Ph.D.

Focusing his remarks on the personal health dimension of NHII, Mr. Rainie encouraged the groups to think of the Internet as a partner and information and communication as tools vital to patients making healthcare decisions. Noting two major barriers to realizing this vision: a lack of support in the provider community for empowering patients and their fear of their medical information falling into the wrong hands, Mr. Rainie said providers had an opportunity to direct them to reliable, patient-friendly sites. He urged the Committee to encourage a different privacy mindset on the Internet and predicted consumers and patients, seeing benefits of searchable medical databases, would welcome NHII’s progress toward providing convenient, reliable, secure access to high quality information.

In his written comments Dr. Brin observed that general openness and reciprocal accountability have served us and even helped enhance personal privacy. Dr. Brin encouraged sticking to a formula that already works. Defying the temptations of secrecy, he suggested we might yet see an open civilization unlike any other, filled with boisterous amateurs and individuals whose hunger for betterment propel the next century.

Ms. Bruening advised that an audit trail was essential to making privacy work and encouraged the groups to look at technologies that provided them and strong authentication. CDT strongly encouraged development of technological solutions, best practices, and laws to facilitate and ensure meaningful patient access and accountability. She encouraged sanctions for employees and healthcare entities training workers about appropriate use of information and the perils of curiosity and information brokering. She emphasized the need, as systems expanded, to monitor and analyze on an ongoing basis the impact of new ways of sharing and linking and for privacy impact statements that looked for the unintended consequences of what was being done, then helped rebalance protocols and systems.

PANEL 1 Stakeholders for Health Information

• Brett Kay, National Consumers League
• Kathryn Wilber, American Association of Health Plans
• Nancy Lorenzi, Ph.D., Vanderbilt University Medical Center

Mr. Kay cited the need to address disparities that would cause many to fall farther behind as the rest move toward technological solutions that require sophisticated skills and higher educational levels. The majority of Americans find medical information, technology and terminology inexplicable. Noting consumers are suddenly expected to be their own advocates and ombudsman, he said healthcare needed to be more like the auto industry where consumers can compare options and make informed, rationale decisions. Information only became useful when we saw its relevance in our lives. Mr. Kay emphasized how we use technology will be important, not technology itself. He noted the need to change priorities about healthcare and prevention, and he said the two major issues that impacted on how viable the system would be were time and trust.

Ms. Wilber characterized healthcare delivery today as a team endeavor involving many different entities that depend on responsible information sharing. She described AAHP’s experience with the National Committee for Quality Assurance, the accreditation body for health plans that had become concerned about a barrier to the progress of HEDIS information systems. Ms. Wilber noted that health plans were rarely mentioned in the interim reports or listed as a key stakeholder. Noting the experience health plans have had in the development and use of information technology and the role they increasingly are being asked to play collecting and transmitting data, she recommended the Committee reconsider that omission.

Dr. Lorenzi recommended a people support plan (to parallel technological implementation plans) that included: (1) quality information available for use, (2) information systems that acquire and present data in a user-friendly, easy-to-use way, (3) security and confidentiality protections, (4) non-technology systems to deal with questions as they arise, (5) an understanding of the benefit of NHII to each population, (6) appropriate incentives for each population. Dr. Lorenzi noted these components required changes in how financial, operational, technical and public policy issues were viewed. She cautioned that if time and money were not spent on the people side of technology transfer, money would continue to drain into information systems that failed.

PANEL 2: Stakeholders for Health Information

• Alana Knudson-Buresh, Ph.D., ASTHO
• Anjum Hajat, MPH, National Association of County and City Health Officials
• Delton Atkinson, Ph.D., National Association of Public Health Statistics and Information Systems

Dr. Knudson-Buresh said it was imperative that strong national and state legislation implement fair information practices and set strong punishments for abuses. Public trust was fragile; privacy and confidentiality issues had a pivotal role to play in the evolution of the health data systems. Dr. Knudson-Buresh urged it was critical that precious resources were targeted to those with the greatest health disparities. She noted that many vulnerable populations might not have access to health data, cited the need to provide greater specificity of the data in numerous geographical areas, and remarked that the challenge was how to use the data in ways that create value.

Ms. Hajat noted the importance of subpopulation data and smaller geographic levels of data for local health departments. One possible solution to addressing the dearth of local data is to empower local health departments/communities with the resources and training to collect their own standardized data. She encouraged efforts to close the information technology gap and pointed out the importance of funding programs like The Health Alert Network, which helped bring local health departments “to the table” and provided necessary information technology infrastructure. She commented that federal and state standards often were not communicated effectively at the local levels. She said this is happening with HIPAA; locals know it is important and does affect them, but are unsure of what they should be doing. She emphasized much would hinge on efficient, effective collaboration and communication between the federal and state governments and local partners.

Mr. Atkinson discussed how to go about implementing the vision, next steps, and considerations. Adopting the data culture envisioned in the reports would require broad collaboration and partnership at federal, state and local levels, and between the public and private sectors. NAPHSIS proposed establishing a collaborative committee comprised of federal, state and local agencies and associations charged with developing recommendations to achieve both visions. Their first priority would be building the infrastructure capacity, especially at the state and local level, to meet the 21st Century vision. The Committee would also be charged with overseeing: enhancement of workforce capacity to collect, process and disseminate health information for decision-making; prioritization of data needs; data standards; and funding partnership.

PANEL 3: Stakeholders for Health Information

• Thomas Burke, Ph.D., Johns Hopkins School of Public Health
• Richard Nugent, M.D., State of Arkansas Health Department
• Michael E. Bird, The American Public Health Association

Dr. Burke observed that public health surveillance was absolutely essential as a core function of public health; yet environmental health lacked even the basic tools to begin to understand the impacts of environmental exposures on public health. He said the information public health professionals need for environmental health has not been “plugged in and we in public health are very disconnected” from the practice of environmental protection. Dr. Burke urged the groups to include in the information infrastructure partnership with other agencies in occupational and environmental health. He encouraged them to serve the core functions of public health at the state and local levels “where public health was practiced” by giving state epidemiologists the tools and connections required to tap in the data resources needed in environmental health.

Dr. Nugent discussed how maternal and child health stakeholders perceive their needs for data and information and their commitments towards developing data and information resources. He said the data needed to be disaggregated by small geographic areas and subpopulations in order to understand better the needs of specific groups within maternal and child health. A data system that can assess programmatic and health systems’ interventions at the state or community level needs to be drawn from a variety of sources. Data must be marshaled and presented to support: community diagnosis and needs assessment processes, consensus building and priorities, developing measurable objectives and measuring progress. Dr. Nugent discussed maternal and child health activities in Arkansas as an example of how, in many states, a commitment is growing to broad use of data in healthcare planning.

Mr. Bird identified ways that NHII could significantly improve the performance of public health systems and the professionals that staff them and what it must demonstrate before it could be endorsed with enthusiasm. He recommended creating a national advisory board, represented by all the major user groups. He encouraged the healthcare community to see that what it does is relevant and appropriate to each population, and noted that turning around disparity in communities requires collaborative methods and looking at each other as partners.

Public Comment

• Dr. Gywn Jones, the National Rehabilitation Hospital Center for Health and Disability Research
• Armin Weinberg, M.D., The Intercultural Cancer Council

Dr. Jones said many data collection methods were not accessible to people with disabilities and that the Web was not always a disability-friendly environment. Not all Web sites, documentation and research tools were accessible and many people would not fill out healthcare information on the Web, because they worry that it might be used to discriminate against them. She noted the need for: consumer information on the Web about provider offices’ accessibility, a method of tracking the development of secondary conditions in order to design better preventative interventions, data on how people with disabilities use alternative care.

Dr. Weinberg read testimony on behalf of Dr. Gilbert Friedell, noting the need for data research to develop strategies for enhancing the collection and analysis of cancer data from racial/ethnic minority and medically underserved populations. The Workgroups were encouraged to consider the recommendations of groups convened by the ICC in order to assure inclusion of this cancer data in a national health database. Dr. Weinberg observed the significant cost of not providing an infrastructure that embodied a national perspective—measured in missed opportunities and programming.

Committee Discussion

The groups reviewed the status and components of the next two reports. They discussed the difficulty of conceptualizing what NHII was, other than an “it,” and observed that this challenge threaded throughout the hearings. Dr. Friedman noted that at the February meeting they needed to set the process they would use for developing recommendations and a plan. Throughout the hearings, they had heard suggestions and now needed to take steps to sustain an interactive process.

PANEL 4 Stakeholders for Health Information

• Amitai Etzioni, The Communitarian Network
• Bette-Jane Crigger, Ph.D., The Hastings Center and project editor for the eHealth Code of Ethics

Mr. Etzioni commended the interim reports’ sensitivity to the need for protections and agreed that public safety was also a legitimate concern. He recommended the creation of six regional, not-for-profit centers funded and supervised by a committee entrusted with the keys. He encouraged the groups to consider the law of technology, which he described as a tug of war between attack and defense mechanisms, and he said high-powered encryption was the most impressive defense tool assuring privacy more than ever before.

Dr. Crigger spoke about codes of ethics for the health Internet and philosophical and ethical considerations that under gird the more often legal and political conversations about privacy. She said using personal health information for marketing purposes reduced the self to a commodity and remarked the European Group on Ethics in Science and New Technologies condemned it. Noting that the privacy and confidentiality provisions of HIPAA essentially allow ready access for marketing purposes, she said harmonizing HIPAA with the European privacy directive and honoring the safe harbor principles FTC had been developing would be a challenge. Dr. Crigger discussed codes of ethics recently created for the health Internet, noting uniformity and collaboration as well as differences.

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DETAILED MEETING SUMMARY

January 11, 2001

Introduction to “Shaping a Vision for 21st Century Health Statistics”

Dr. Friedman explained that NCVHS, NCHS and HHS Data Council have been engaged for a couple years in developing a vision and strategic plan for health statistics. The first year, activities focused on discussion groups held in Washington and across the country and at a National Academy of Science Workshop. Based upon this input, the Workgroups developed the interim reports being discussed that day. For six months, the groups had received feedback via a series of regional public hearings. Dr. Friedman introduced this fourth and final hearing as an opportunity to obtain further advice and specific suggestions from stakeholders and a spectrum of professional associations; as well as to gain feedback on: (1) confidentiality, privacy issues and health statistics; (2) current issues (such as the role of informed consent in health statistics); and (3) more technical matters (e.g., how to deal with privacy and small numbers, with privacy of cell size suppression, with privacy of data subjects on releasing public health data to researchers, as well as emergent privacy issues).

He noted that the interim report encouraged increased use of shared standards leading to more linkage of data sets, which clearly raises a host of confidentiality and privacy issues that the groups asked for feedback on. One of the interim report’s principles is development of unitary data collection and use of those data for multiple purposes. He said both groups looked forward to hearing comments on that principle and its implications for confidentiality and privacy. The interim report also emphasized the need for greater electronic access and easier access to aggregated data. Feedback was invited on that principle and its implications for confidentiality.

Dr. Friedman observed that most likely a host of confidentiality and privacy issues relating to health statistics had not yet been envisioned but would need to be confronted over the next 5-, 10- and 15-year timeframes. Help in visualizing what was not yet clear would be welcomed.

Introduction to “Toward a National Health Information Infrastructure”

Commenting on the National Health Information Infrastructure, Dr. Lumpkin said the groups leaned towards a more customer friendly title: perhaps “Better Information for Better Health.” He began by describing what NHII was not, as neither a national database nor a technology. The Workgroups were trying to chart a direction for health information development through the rest of this decade and century. They were talking about how data, now stored in many places, could be placed under control of the individual it referred to, as well as be used by those providing care, so it truly became information that could improve each person’s health.

Dr. Lumpkin noted that this was a crucial time for healthcare, which fundamentally had not changed over a century. Other industries had found ways to bring knowledge into encounters, monitor events, help people focus on what was vital, and improve outcomes. In healthcare, automation had not yet met that promise. The first step was this vision for the future, the document the testifiers had been asked to comment upon. The next step was to discuss barriers to realizing this vision, to look towards short- and long-term steps and recommendations for the incoming Secretary.

He said they needed to make sure to address issues so the vision includes a person-centered information environment that gives individuals the ability to exercise some control over their healthcare. Clearly, people wanted to do that; the biggest problem had been a knowledge gap. Information technology could bridge that gap, enabling people to become full partners in tending to their healthcare.

After conducting this fourth and final hearing, the day’s and subsequent follow-up comments would be synthesized into a series of recommendations that would be placed before the full Committee during this calendar year.

Perspectives on Privacy and Confidentiality

• Lee Rainie, Pew Internet & American Life Project

Mr. Rainie, director of PIALP, the research organization fully funded by the Pew Charitable Trust to do nonpartisan analysis of the social impact of the Internet, submitted a report, “The On-Line Healthcare Revolution: How the Web Helps Americans Take Better Care of Themselves.” Focusing his remarks on the personal health dimension of NHII, he encouraged the groups to think in even more expansive ways of the Internet as a partner and of information and communication as tools particularly important to patients making healthcare decisions.

Fifty-two million American adults, 55 percent of those with Internet access, have used the Web to get health or medical information. More adult Americans have used the Internet to get health and medical information than have bought products on-line, performed on-line banking or made travel reservations on the Internet. Increasingly interested in shared decision-making, health seekers turn to the Web for information they find hard to get from caregivers. Half said access to information on the Web improved how they took care of themselves; many reported the input directly affected their decisions about care and treatment. Mr. Rainie predicted consumers and patients, seeing benefits of searchable medical databases, will welcome NHII’s progress toward providing convenient, reliable, secure access to high quality information. He noted two major barriers to realizing this vision: a lack of support in the provider community for empowering patients and their fear of their medical information falling into the wrong hands.

The first step he encouraged was a buy-in from the medical establishment. Patients, he said, would hunt for medical information, whether or not their doctors sanctioned the searches. Mr. Rainie said health seekers went on-line anxious to get information that would help them make important, at times critical, decisions. In most cases, they felt they got more information about illness, prognosis and treatment options from Internet sources than from medical professionals. More than 80 percent of health seekers found the information they wanted through an Internet search. Sixty-four percent ended up in random, unknown places. Some 86 percent said they worried about unreliable on-line sources. Mr. Rainie said seekers would greet warmly reliable guides and mechanisms to verify the accuracy and validity of health information. Since most searched on-line just before or after a doctor’s visit, healthcare providers had an opportunity to direct them to reliable, patient-friendly sites.

Mr. Rainie supported transparency and privacy awareness. Eighty percent of health seekers said a major appeal of getting health information on the Internet was anonymity. Many said they looked on behalf of a relative or friend the last time they hunted for health information on-line and worried that their click stream might be misread. Eighty-five percent were concerned that their insurance company might change their status or raise rates if they knew what Web sites they had visited. More than half feared their employers might take action. He suggested a reason privacy fears run high is that Internet users often do not know what is happening. They would appreciate education and technology tools to restore a sense that they were in charge of and knew what was being done with their personal information. Mr. Rainie urged the Committee to encourage a different privacy mindset on the Internet. In most cases, the burden of action was on users who were tracked and provided by Web firms unless they took steps to opt out. Users want the presumption of privacy when they go on-line. They want the burden of action shifted to on-line firms.

Concern about privacy, Mr. Rainie noted, extended to the idea of on-line medical records. Sixty percent of Internet users disapproved of putting medical records on even a secure, password-protected site. African Americans, parents and Internet newcomers were the most sensitive to privacy violations. He suggested apprehension would diminish as people gained on-line experience; those on-line for several years exhibited less concern about privacy violations. He predicted that if a doctor advised that creating an on-line medical record would result in better care, many would allow the record to be created.

Mr. Rainie predicted many worries would dissipate with: (1) anti-discrimination laws that assuranced users information from their on-line medical searches could not be used against them; (2) if penalties were put in place for privacy breaches. He said consumers welcomed news that HIPAA violators would be subject to civil and criminal penalties, but that 81 percent of health seekers thought they should be able to sue if a health or medical company gave away or sold information about them after saying it would not.

He noted that HIPAA would not cover a majority of the nation’s more than 17,000 health-related Web sites. Preliminary analysis by the Health Privacy Project, based at Georgetown University, indicated many Web sites do not fall into the categories of organizations covered by the regulations. Many of the most common features of health Web sites would not be covered: e.g., health assessments, applications for clinical trials, chat rooms, bulletin boards and personal management tools, such as on-line disease management and patient-generated medical records.

• David Brin, Ph.D.

In written comments, Dr. Brin who was not well and unable to attend, observed that: (1) each of us understands that knowledge is power, (2) criticism is the best antidote to error, and (3) few people are mature enough to hold themselves accountable, but in an open society, adversaries pounce on each other’s errors. He noted four social innovations foster our wealth and freedom: science, justice, democracy, and free markets and that each of these accountability arenas functions well only when everyone gets relatively free access to information. Cheating, however, was always a temptation.

While it is true that new surveillance and data techniques pose vexing challenges, Dr. Brin proposed it might be wise to consider how reciprocal accountability, the widely-shared power to shine light on the mighty, has worked so far. Acknowledging that dataflow controls might be needed at times, Dr. Brin noted some problems are more readily resolved by enhancing reciprocal accountability. Empowering individuals with encryption and cybernetic anonymity simply empower a new elite; could anyone justifiably claim exemption from accountability?

Privacy and personal safety were best safeguarded, Dr. Brin suggested, by catching “peeping Toms.” We are all better protected by knowing, than by forbidding others to know. General openness has served us—even helping to enhance personal privacy. Dr. Brin encouraged sticking to a formula that already works: most of the people knowing most of what’s happening, most of the time. Defying the temptations of secrecy, we might yet see an open civilization unlike any other, filled with boisterous amateurs and individuals whose hunger for betterment propels the next century.

• Paula Bruening, Center for Democracy and Technology

Ms. Bruening, staff counsel with CDT, a public interest group dedicated to promoting consumer empowerment and free speech on the Internet, said she was impressed by the documents’ grand vision and benefits, but noted that they illustrate the health system’s move toward large scale information sharing and how lines between information are blurred. What once was perceived as treatment information is now used for reimbursement and reminder notices that sometimes bleed-over into marketing information. In order to participate in healthcare in America, she said one found oneself less empowered to say “no” to certain uses of information. In many cases notice was required by HIPAA, but could be denied if a patient did not consent to certain uses of information. She observed that for a long time this had been true, and necessary, in our healthcare system.

CDT felt that HIPAA dealt with some issues better than others. The challenge, Ms. Bruening said, was to look closely at HIPAA and put into place things needed to empower patients and protect privacy.

Noting reports indicated the large number of healthcare workers who might access a patient’s medical data while providing healthcare and administering the system, Ms. Bruening said she could not find in the documents or HIPAA the accountability that should be built into the system. An audit trail was essential to making privacy work. She encouraged the groups to look at technologies that provided them, allowed healthcare entities to check them on a regular basis, and provided strong authentication.

Ms. Bruening observed that the concept of privacy had evolved from a right to be left alone into the ability to control the manner in which information about an individual was used. CDT was very interested in technological solutions, best practices, and the laws that could be put in place to solve these problems.

She emphasized the importance of healthcare entities training workers about appropriate use of information and the perils of curiosity or information brokering. Systems needed to be in place that provided sanctions for employees.

Ms. Bruening remarked on the significance, in terms of accountability, of patients having meaningful access to their information. Noting this put a burden on the healthcare system and that it was probably not always wise to have a patient look at their medical record without some interpretation, she observed that patient access in a meaningful, helpful way put a sense of control back into the hands of patients and raised the accountability factor of the healthcare system.

Ms. Bruening encouraged use of internal audit trails to monitor who accessed information and for what purposes. Protocol that included requirements for ongoing and intensive privacy review and privacy impact statements could keep a close eye on privacy as a system developed.

She emphasized the need, as the system expanded, to analyze on an ongoing basis the impact of new ways of sharing and linking and producing privacy impact statements to analyze closely what was happening. Ms. Bruening encouraged looking for the unintended consequences of what was being done, and then building balance into the protocol and system. CDT strongly encouraged development of technologies to facilitate meaningful patient access and accountability.

Discussion

Ms. Bruening said the full Committee’s recommendations on security, made prior to the development of the NPRM on security, should be amplified in the report as core statements about the use of technologies and building in protocols within individual healthcare entities. She suggested privacy impact statements could be developed through an institutional review board in conjunction with the Federal Government. A board comprised of different members of the healthcare community (e.g., healthcare reimbursement, treatment, hospital systems, clinics) that on an ongoing basis looked at potential uses and the impact for privacy would be helpful. Dr. Lumpkin commented that in Illinois a privacy review committee had been instituted within the state health department to look at new forms or information requests from the public. Ms. Bruening said that was the kind of thing she was suggesting.

Mr. Rainie said buy-in for patient information gathering via the Internet from those providing clinical care might be structured as a covenant. If providers considered that they, too, sought information, they might see some material coming at them from patients who understood more as relevant, useful and potentially an expansion of their own thinking. Noting doctors could not tell patients not to look for information; he suggested this could be a powerful tool for shaping care outcomes. He recommended highlighting stories of doctors experienced with Web sites who transferred time-consuming exchanges on-line. Dr. Harding commented that this was an issue to include in core competencies in residency training. Assisting patients seeking health information could sometimes be frustrating, but when the patient was better educated, the possibility of compliance “was almost guaranteed.” Dr. Shortliffe remarked that one of his jobs was to talk to physician groups about the Internet and consumer access to health information. He remarked that he saw a large number of physicians who encouraged use of the Internet. A significant number were beginning to see this as inevitable and struggled, within the time constraints of a busy practice, to find ways to help patients use the Internet and information wisely.

Ms. Bruening said the jury was still out on the increased voluntary posting of privacy policies on Web sites. Policies could become long, convoluted and difficult to understand. Consumers reported feeling more comfortable when there was also a privacy seal program. Mr. Rainie said health seekers were comforted by privacy policies, but their biggest concern was security breaches. Among their greatest concerns about medical records is the reservation that no technology is bullet proof and a dread of potential consequences if this information is breached. Having a seal program behind privacy policies, Ms. Bruening suggested, provided a level of enforcement if users felt there had been a data spill. Dr. Zubeldia asked if the concept outlined in the report of a personal health information appliance could be a potential solution. Mr. Rainie replied that any mechanism that gave Internet users a sense that they were in charge (or at least would be notified) would be beneficial. He concurred that the information age demand of “right to be left alone” had become “the right to control my identity.”

Ms. Bruening advised that the more the Committee showcased the benefits of exchanging information, the more willing healthcare consumers might be. She mentioned the Platform for Privacy Preferences, which read notices for the consumer and kept them away from sites lacking privacy protections. Consumers needed privacy-enhancing tools and technologies, she emphasized, that allowed them some control over how their information was shared and used. She encouraged the groups to both communicate the benefits and give healthcare consumers some sense of power over what was going on. Mr. Rainie said Americans were relatively comfortable with information transactions, but did not know the benefits. Helping them understand the context would be enormously beneficial. Ms. Bruening pointed out that nothing upset people more than having their information used in ways they didn’t know about or understand. So long as there was a one-on-one relationship, an understanding about what that information exchange meant and its ramifications, people could be fairly comfortable.

Asked, “Who should do this?” Mr. Rainie replied that different elements of the system could tackle different aspects of the problem. If the Secretary of HHS thought NHII was a good idea, then the Federal Government needed to demonstrate benefits and set up uses, protections and penalties that needed to be broadly in place. But perhaps it was a doctor’s burden to say, “Besides getting specific benefits, if we strip away any identifying information and pass this along to community health authorities, here are other things that will flow from this.” Mr. Rainie suggested that was a local burden.

Ms. Bruening emphasized being cautious about legislating for evolving technology. The technology, system and business models all change and by the time everything is in place, “you are dealing with a very different animal.” Taking an entity-by-entity approach was important. Building in best practices, protocols and technologies were important. Good legislation percolated up. Best practices informed the creation of good legislation. Ms. Bruening encouraged building all this from the beginning with the motivation that this would make the system work well in the end.

Responding to a query about how to deal with the massive amount of data accountability tracking will create, Ms. Bruening pointed out that data did not have to be analyzed every day. Noting that the accounts are audited every year, she said the privacy books could be looked at in much the same way.

Dr. Lumpkin explained that the groups would compile a set of questions and asked the panelists to consider written responses. He noted that their comments would be helpful, not only to both Workgroups, but also the Subcommittee on Privacy that would also be looking into these issues and the full Committee as they considered the final report.

PANEL 1: Stakeholders for Health Information

• Brett Kay, National Consumers League

Mr. Kay, director of Food and Health Policy for America’s oldest non-profit consumer advocacy organization, provided a consumer perspective on the reports. In order for consumers to actively and effectively participate in the healthcare market, they needed useful, understandable information. Everyone needs to feel confident that sensitive, personal information about their health and well-being is secure and will only be used for individual and common good, not marketing or discrimination. Consumers need access to the system. The growing gap in the distribution and access to information and resources affects the social, economic and physical health of the nation; low-income and minority consumers need to be included.

The crucial point about useful information, Mr. Kay observed, was even more than accurate data, but showing why the data was important—how it affected an individual’s life. The majority of Americans do not understand health and medical information, technology or the terminology that goes with them. Many educated consumers have a hard time understanding what a doctor or reporter is saying about healthcare. Even when they do understand, they may not be able to put the information in context (e.g., the average consumer may not know that a certain hospital with a high mortality rate gets the toughest cases or that the hospital that does more of a particular surgery will most likely have a better success rate.) NHII could illuminate the significance of the context.

Noting the reports highlighted the need for consistent platforms and standardization of reporting and technology, Mr. Kay pointed out that the public has the same needs. There are no consistent terms for many health-related issues or data. Numerous quality care measures are used with different explanations. He said healthcare needs to be more like the auto industry where consumers can make accurate, informed decisions because they can compare options and make rationale decisions.

Mr. Kay said he was encouraged to see that both reports paid close attention to the issue of privacy and patient confidentiality, but he cautioned that good intentions could be distorted in the political process. Strict federal standards were needed that would protect personal health information and penalize those who violated it. If consumers did not allow their information to be shared, there would be no NHII.

Commenting on the gap that already exists in health knowledge, access to healthcare and coverage for services, Mr. Kay emphasized the need to address the disparities in our society as a whole and within the healthcare arena that would cause people to fall even farther behind as we move toward technological solutions that require sophisticated skills and higher educational levels Noting the reports relied heavily on technology, he emphasized how we use technology will be important, not technology itself. The scenarios with people using risk monitors and global positioning to track healthcare while hiking in the country were not realistic for the average person, given time and financial constraints and other burdens.

Mr. Kay focused on the need to change people’s priorities about healthcare and prevention. He observed that this is a reactive, not proactive culture, when it comes to healthcare—an acute care system, not a preventive one. He pointed to the success the financial community had in changing the average consumer’s attitudes about money and investing. People saw there was useful information “out there” and felt they could benefit. They recognized a direct connection with and positive outcome from active engagement in the process. Healthcare was not as “sexy as the stock market” and prevention was not always seen as a valued commodity or worthwhile goal at the national institutional level. The managed care model (originally conceived, like NHII, as an integrated care model, based on information technology and data, to keep people healthy through prevention and treat the sick in a more effective and efficient manner, based on utilization review and other technologies) became distorted—based more on cost containment than health prevention.

Mr. Kay noted the reports assumed that people would immediately see the good in this seamless system and willingly participate. He questioned why people should put all their information into a personnel health record; many Web sites designed to track personal information and health data had failed or were in trouble. He identified two major issues that had a direct impact on how viable the system would be: time and trust. People are squeezed for time and one more burden might be too much. Add concern for personal privacy and real barriers emerge. As the interim report stated, individuals would have to accept more personal responsibility for their own health—and this was a double-edged sword. It was beneficial for individuals to be a part of the decision-making process in their healthcare, but if the burden became too great, many might withdraw from the process.

As more onus was put on consumers for healthcare, many lacked the skills and information to make appropriate health decisions. Consumers were suddenly expected to be their own advocates and ombudsman. They needed the proper tool in the appropriate context and useful information in a culturally sensitive format that was easy to read and understand.

Mr. Kay encouraged the groups to focus on policies intended to serve the entire population. He called for sound, unbiased scientific data and research to demonstrate the need for programs and policies, such as NHII, and for public education programs that made them valued commodities—effective, useful and bearing an impact on their lives.

• Kathryn Wilber, American Association of Health Plans

Ms. Wilber, Executive Director for Private Market Regulation at AAHP, characterized healthcare delivery today as a team endeavor involving many different entities that depend on responsible information sharing. She described the memberships’ experience with a National Committee for Quality Assurance report of 1998, which is the accreditation body for health plans and has been at the forefront of the development of performance measures, such as HEDIS. NCQA had become concerned about a barrier to the progress of HEDIS information systems. The report indicated that systems needed to evolve to information frameworks that included characteristics like data quality and automation, as well as security and confidentiality. The difficulties encountered were similar to those listed in the reports: privacy and security issues, a fragmented marketplace, competitiveness, and the lack of standardization.

Ms. Wilber said AAHP was committed to finding solutions. Remarking that they had come some distance since 1998, she suggested their publication regulations might offer a view into the future as the Workgroups moved into this information infrastructure.

Ms. Wilber noted health plans were rarely mentioned in the reports and were not listed as a key stakeholder. She noted the experience health plans have in the development and use of information technology and the role they increasingly are being asked to play collecting and transmitting data, she recommended the Committee reconsider that omission.

• Nancy Lorenzi, Ph.D., Vanderbilt University Medical Center

Dr. Lorenzi, Professor of Biomedical Informatics and Assistant Vice Chancellor for Health Affairs, VUMC, said she was not representing a national association, even though she was on the board of the American Medical Informatics Association; an author of several books on managing technological change, she spoke from the perspective of managing the people-side of the technological change.

The true mega-changes of the next decade, Dr. Lorenzi predicted, will center on gathering, managing and using clinical information. She said this was true for all the healthcare areas: administrative, clinical, teaching and research. Reengineering of the healthcare information management infrastructure had only begun. The press for improved access to healthcare, expectations of healthcare provided at lower cost, development of vertically and horizontally integrated delivery systems, and emphasis on wellness and transition to medicine based upon an understanding of the human genome were creating dynamic changes in roles and responsibilities in the healthcare system.

Dr. Lorenzi outlined four cornerstones for developing a new information management paradigm for healthcare that rest atop the required technological infrastructure: (1) producing structures that represent data and knowledge, including terminology and standards; (2) Developing methods for acquisition and presentation of data; (3) managing change for optimizing the use of information and; (4) integrating information from diverse sources with confidentiality and privacy protection into collective resources having more value than the sum of the parts. She noted these cornerstones fell into two groupings. On one side were the infrastructure, technology, standards, and terminology—issues medical informatics dealt with. On the other side were issues that affect people and their needs and rights—what we could or could not do with this terminology. Dr. Lorenzi focused on individuals and what could be done to lessen those barriers. She suggested that Osler’s message, “Listen to the patient; he’s telling you the diagnosis,” also spoke to this vision. “Listen to the people; they are telling you what will work for them.” She said it was important to realize that implementation of information technology in healthcare might lag behind the removal of technological barriers. Healthcare implementations of IT take place among extremely heterogeneous groups (e.g., patients, providers payors). Paraphrasing the message of the Field of Dreams, Dr. Lorenzi noted the message in the technology area was “build it and a reasonable number of people will come.” She observed that, while in the for-profit sector this meant enough people to yield a profit, many healthcare areas did not have the luxury of only taking care of people who liked technology. Everyone had to be taken care of. Multiple systems often had to be provided, efficient or not.

Dr. Lorenzi said many of today’s clinical systems could only promise long-term benefits to patient care at a cost to short run physician productivity. These systems, which might hold little attraction to physicians who thought and were compensated in short-run terms for current productivity, often could only be implemented when physicians were direct employees of the organization implementing the system.

The technically best system would be woefully inadequate, Dr. Lorenzi cautioned, if implementation was resisted because people had low psychological ownership in it. With high ownership, even a technologically mediocre system could function fairly well. She recommended creating a people support plan that paralleled the technological implementation plan and included: (1) quality information available for use, (2) information systems that acquire and present data in a user-friendly, easy-to-use way, (3) security and confidentiality protections, (4) non-technology systems to deal with questions as they arise, (5) an understanding of the benefit of NHII to each population, (6) appropriate incentives for each population.

Dr. Lorenzi observed these six support components required changes in how financial, operational, technical and public policy issues were viewed. She noted the need for: (1) a process system to identify unsubstantiated information on the Web; (2) research into human-centered computing, presentation of information, and user-friendly data collection; (3) ways to increase the number and quality of human-centered support systems without putting the burden on the patient/physician transactions; (4) ways to ensure that security and confidentiality protection was in place; (5) research to identify the different benefits and incentives to each population; and (6) research to identify appropriate benefits for use of NHII.

Dr. Lorenzi concluded by cautioning that if time and money were not spent on the people side of technology transfer, money would continue to drain into information systems that failed.

Discussion

Dr. Lorenzi observed that, 95 percent of the time, requirements forcing people to overcome their own resistance were not the way to go. She described an information system installed, without the staffs’ knowledge, in a Canadian hospital. Residents refused to use it. She commented that Ellen Dowling, a Ph.D. at M.I.T., tracked sabotage rates as high as 35 percent to data when a hospital information system was installed in either for-profit or not-for-profit organizations. One person had to have the vision, Dr. Lorenzi observed. But once that vision was in place, a series of champions were needed. They could be respected individuals or groups, either inside or outside an organization, who said this “is going to work.” The Workgroups had the vision. Now they had to engage in private/public partnership with groups represented in the hearing and determine, together, how they could move their vision forward. She suggested engaging one population at a time and determining what was important to each. They had the technological and the quality in presenting information and only had to acquire and present quality information in easy ways

Dr. Deering assured Ms. Wilber that any omission of health plans from the report was unintentional. She asked if gaining buy-in for these concepts would be a hard sell. Mr. Kay remarked that consumer were incredibly heterogeneous. Some were already actively engaged. So many Web sites for health existed because people wanted information. The market for dietary supplements had grown tremendously, despite the fact that there was little clinical evidence they worked or, in some instances, even were safe. Another segment wanted to participate, but did not know how or have time. Others did not see the benefit. He recommended working in non-judgmental ways, offering a sense of ownership and showing the benefits to their children and community. Mr. Hunter proposed the theory that the single most powerful force for technology diffusion was peer pressure to have “what the other guy’s got.” He asked how they could have a similar impact influencing consumers to see the benefit of sharing information. Dr. Lorenzi said that they needed to segment various groups: the doctors with information, the over-65 population, school age, etc. Different strategies worked effectively with different populations.

Dr. Shortliffe clarified that Health on the Net did not provide oversight. They had a logo that you could put on a Web site if you followed their guidelines, but they did not check out Web sites. He noted professional societies and other groups were reluctant to take responsibility as custodians for health information on the Web. Consumers had always been able to get bad information in print, he reflected; what seemed new was the issue of easy access. He suggested that people developed coping mechanisms for identifying what was and wasn’t good. Mr. Kay agreed that hucksterism, fraud and bad information were not new—but now they reached a million people. He noted the FTC concentrated on healthcare recently, looking closely at dietary supplements and other so-called health treatment on the Web.

Mr. Kay commented that people were still trying to figure out how to reach all the populations effectively. There were a lot of studies on how to be culturally appropriate. He said the first challenge was identifying this gap and realizing that the consumer and general public were not just one face. Dr. Lorenzi suggested the people support plan could help the Workgroups understand the different population groups: just as every patient has a number of unique traits, every group had its unique points. Time had to be invested in getting to know those patterns. If NHII was going to be made available to as many as possible, they needed to look at what would pull everyone in. Remembering when there was VHS versus beta VCRs, Dr. Lorenzi agreed that the adoption or spread of technology also played a part. People would be pulled in, but it would not be an easy process. Mr. Kay added that spreading information to populations also involved working through people respected and listened to in the community (e.g., community leaders, pastors, rabbis). They knew how to get the message out. He recommended getting them to understand and buy-in early; their input would be important in the focus groups designing messages.

Everyone involved in the process should reach out to the groups, Mr. Kay said. The government obviously had a responsibility as facilitator and convener. Everyone involved in the medical and health communities and the health plans had obligations. The academic institutions and the teaching hospitals had a role in training the medical professionals. The business community and consumer groups need to disseminate it.

Dr. Lumpkin noted they heard again that individual clinicians were not in a position to make these difficult, costly changes. He asked what the federal government and the health and associated group plans should do. Ms. Wilber observed that the issue of who should develop the capital to implement the systems that form the provider health dimension concerned health plans. Everyone really pays at some level, she remarked, asking, “How do we get to the point where it is shared?” The plans were concerned that physicians’ were not prepared for administrative simplification transaction standards. Who would do the necessary outreach and education—and who pays for it? Employers, already “paying a good bit of the bill,” were also concerned.

Dr. Lumpkin observed that a first step in any systems change was actually coming to believe that there was something out there to go towards, citing an old observation that any technology sufficiently evolved appeared to be magic. (None of us know everything about how our cars work; it seems almost like magic.) Dr. Lumpkin said the groups’ role in pushing forward this vision is to bring people to see the benefit for business, defined as return on investment, is possible. He asked where those studies of return on investment should be done. Noting that the quality and credibility of analyses of return on investment would be important in evaluating benefit, Ms. Wilber advised choosing academic research-based/government, highly regarded, entities that would catch the attention of those trying to make these decisions.

Dr. Lumpkin reminded everyone of the Web site and that comments were solicited from the general public, as well as those testifying here.

PANEL 2: Stakeholders for Health Information

• Alana Knudson-Buresh, Ph.D., ASTHO

Dr. Knudson-Buresh is Senior Director for the Public Health Information and Infrastructure Policy, ASTHO. ASTHO is comprised of the senior health officers in each of the 57 states and territories. Their perspectives on the issues reiterated in the vision report are reflected in her comments about privacy and confidentiality, workforce development, geographical issues, and access to data in the private sector.

ASTHO concurred with the privacy and confidentiality issues identified in both interim reports. Dr. Knudson-Buresh said it was imperative that strong national and state legislation implements fair information practices and establishes strong punishments for abuses. Public trust was fragile and must not be jeopardized. Privacy and confidentiality issues must continue to play a pivotal role in the evolution of the health data systems.

ASHTO supported the continued enhancement of the capacities of the public health workforce to better identify public health threats and opportunities. ASHTO encouraged the ongoing development of academic and continuing education programs in informatics geared to provide this much needed training to the workforce.

Dr. Knudson-Buresh noted that untapped resources or opportunities (e.g., innovative partnerships with the private sector) might lead to new ways of looking at old problems. She asked the groups to consider what the public health workforce might learn working with an entity like Sandia Labs in New Mexico, that has specialized training in data modeling and data mining. She said it was essential to support incentives for new partnerships, which build bridges to non-traditional health research data experts.

As public health was challenged to do more with less, Dr. Knudson-Buresh advised it was critical that precious resources were targeted to those with the greatest health disparities. She noted that many of the data sets research currently used in assessing the health of state populations were not conducive to examining subpopulations.

Dr. Knudson-Buresh commended the Community Health Status Indicators project, sponsored by the Health Resources and Services Administration, as an excellent first step in assisting state and local health departments in assessing the health of their populations. By providing comparisons with other geographical areas and Healthy People 2010 objectives, a wide array of data users could assess the health status of counties.

She remarked on the need to provide greater specificity of the data in numerous geographical areas. Many state health departments lacked the statistical expertise to develop the methodologies needed to conduct sophisticated spatial analyses. She suggested NCVHS consider how to help states redefine geographic areas that allow for more precise analyses of these subpopulations.

Noting that an underlying premise of both interim reports was the intent to provide more usable health information to a wide array of users, Dr. Knudson-Buresh said ASTHO commended the groups’ efforts in recognizing that the use of health data extends beyond public health and medical care. She said the challenge was how to use the data in ways that create value.

Pointing out that many vulnerable populations may not have access to health data; Dr. Knudson-Buresh proposed that the definition of health disparities needed to be expanded to include lack of access to health data. As the vision for health data evolves, she said ASTHO encouraged the groups to consider ways to increase access to health data for all populations.

Dr. Knudson-Buresh encouraged the public sector to work in concert with the private sector in the healthcare data arena. Public health relies on immunization registries, hospital discharge data, and many other private sources for data. She emphasized data standardization would enhance the comparability of data and allow the public sector to better communicate with its private sector counterparts.

• Anjum Hajat, MPH, National Association of County and City Health Officials

Ms. Hajat commented on aspects of the reports that rang “true” from a local public health perspective. She said the issue of smaller geographic levels of data was important for local health departments challenged to do effective community assessment and program evaluations without sufficient data. Subpopulation data was also important; it was frustrating, she noted, for those who see and work with these populations, to not have the data to back up what they saw daily. Ms. Hajat said data at the county level worked for most health departments, though some counties preferred subcounty data and many New England health departments worked on the township and city levels. She said finding the unit of analysis that worked was a challenge and recommended collaborating with locals. She recommended addressing the problem of the lack of local level data, by providing local health departments with the resources and skills to collect their own data in a standardized fashion, so it can be compared across the nation.

The information technology gap discussed in the vision paper was another problem in local health departments that needed to be focused on. The Health Alert Network, which helped bring local health departments “to the table” and provided necessary information technology infrastructure, needed funding.

Ms. Hajat remarked that with the increasing cost of healthcare and advent of managed care, health departments had moved away from the provision of clinical services and were taking on more of an assurance role providing population-based services. She advised it was important to understand how this trend would impact the health of communities

Citing the National Electronic Disease Surveillance System as an example of how states could meet their own needs, Ms. Hajat observed that standardization was essential in order for the project to be effective and implementable. She pointed out that a lesson to learn from this initiative was that often federal- or state-level standards were not communicated effectively at the local levels. She noted this happened with HIPAA. Locals knew it was important and would affect them; but they were not sure how, and they were confused about what they should be doing. She recommended marketing public health and highlighting the importance of health statistics and encouraged bringing a broad group of interested parties together on these issues. She suggested federal support for local and state initiatives should include both technical assistance and continued funding and pointed out the need for training of the workforce. Another problem the local level needed help with was offering incentives for skilled workforce members to stay in rural and underserved areas.

Ms. Hajat emphasized that a lot will hinge on efficient, effective collaboration and communication between the federal and state governments and local partners.

• Delton Atkinson, MSPH, MPH, National Association of Public Health Statistics and Information Systems

Mr. Atkinson, the new executive director of NAPHSIS and former division director of the Division of Information Technology at NCHS, commented on how to go about implementing the vision, next steps, and considerations. He shared his premise that any successful organization, system or infrastructure had an agreed-upon vision, every component understood where it was going and agreed with it. And he noted the reports shared a common theme: health information in the future must aid decision-making. But he noted that “silo” approaches to data collection, analysis and dissemination make it difficult to have sound, reliable, relevant information for decision-making. Mr. Atkinson said adopting the data culture envisioned in the 21st Century vision will require broad collaboration and partnership at federal, state and local levels, and between the public and private sectors. The NAPHSIS wholeheartedly supports this and found it refreshing to see this as one of the ten principles.

In operationalizing this vision, Mr. Atkinson passed on NAPHSIS’s suggestion that a collaborative committee comprised of federal, state and local agencies and associations (e.g., ASTHO, CSTE, AMCHP, NAACHO, NAPHSIS and others) be charged with developing recommendations to achieve both visions. NAPHSIS strongly favored this partnership and was ready to be an active participant.

Mr. Atkinson said that this collaborative group needed to address at least five crucial areas. Building the infrastructure capacity, especially at the state and local level, to meet the 21st Century vision is the first. For this vision to be meaningful, data must be available at the lowest possible geopolitical levels—where services are delivered. Mr. Atkinson suggested the vision presented an opportunity to reinvigorate the state center concept, not as holder or owner of the data, but as a true virtual center with the goal of insuring that health information for decision-making is available at state and local levels. Virtual centers would vary state-to-state, based on needs and political dynamics. A center might house some, most, all or none of the health data, depending on each state’s culture and decision-making. It could be a single agency or be distributed throughout the state health department, but linked operationally through a central coordinating data body that set data standards and policies to guide statistical activities. All centers would assure that the information was collected, linked when necessary, analyzed and disseminated.

The coordinating group would also be charged with: (1) enhancing the workforce capacity to collect, process and disseminate health information for decision-making; and (2) addressing how we train, motivate and help the statistical workforce think in these terms, produce and deliver information in ways the populace could understand.

he third charge, Mr. Atkinson remarked, was prioritization of data needs and data sets. It is extremely difficult, he noted, to try to capture all data to measure every aspect of health; there is no budget to make that happen. He asked in what ways could we better use the data and master the collection and transformation of these data into information to drive future actions? What data was truly needed and how might we prioritize these? What data should we stop collecting?

Fourth: data standards, including the collection, transmission and the dissemination of health information. The ability to compare and contrast data across multiple areas and data sets is heavily dependent on comparability of definitions, formats and terms. A forum already exists, which is dealing with some of the standards issues in the X12 for administrative data and the HL7 for non-administrative data. Mr. Atkinson recommended working within the framework of this process rather than trying to create our own standards. He emphasized that public health should and must be a stronger voice and presence in these standard-setting bodies.

Fifth: funding partnership. Mr. Atkinson noted that the states and localities put significant funding and other resources into health information activity. Federal help is needed to enhance this process. The shape ands extent of this federal and state funding partnership was an area of debate and discussions.

Mr. Atkinson reiterated the issue of having a sound marketing strategy for the vision and operational plan. Calling public health statistics a well-kept secret, he said there were endless stories to tell about the health of our citizens, and we did not do a very good job of telling them. Discussions, strategizing and recommendations needed to come forward. The next step, he said, must be a collaborative effort to define specific steps to put this vision into place.

Dr. Friedman asked how they might reach one small, but important group: the state health officers and bring them along as active participants in the process. Dr. Knudson-Buresh observed that people become more accountable: “You can go before your state legislature as a state health official, and you have to demonstrate value—and data is the foundation to demonstrating that value.” She described how, through the Robert Wood Johnson Foundation, a program trains state health officials on orientation, provides links to different resources and an overview of what is available. She cautioned that the average turnover rate for state health officers was about 24 months, and suggested that senior deputies were continuous in their roles and had more operationalization-type duties. Mr. Atkinson pointed out that the health statistics community, especially at the state level, has to understand the priorities of the state health officer and deputy and provide the information that is needed.

Noting they had said that, for this vision to be meaningful, data must be available at the lowest possible geopolitical level, Dr. Lumpkin remarked that in Illinois when they printed out reports at the local level they got what was euphemistically called a Star Report. Every time data was not significant (cell sizes too small, or they were too far from the census year to have denominator data) the system printed out asterisks. Unless the print out was a very gross summary, in many jurisdictions, there were just asterisks. Illinois has counties with populations of 9,000, and talking about health statistics at the county level becomes very difficult. Mr. Atkinson proposed a strong research agenda that looked at a small area of statistics applied to something like NCHS. Dr. Knudson-Buresh pointed out that North Dakota and some other states come up as asterisks, too. She said scientific methodologies could be developed to overcome those issues. Dr. Lumpkin asked what the incremental cost would be of doing the NHANES on a national level with some state oversampling so the data would be meaningful at certain geopolitical jurisdictional levels. Mr. Atkinson said the question was how much should be done at the national level or whether to provide a mechanism so states could adapt work already done to a more detailed, state specific survey. Mr. Hunter said NCHS was always asked about this. The sample size of the Health Interview Survey would have to be increased 20 or 30 times to eliminate the asterisks. It has not been realistic to double or triple the cost of programs that already are a hundred million dollars. California has a Health Interview Survey similar to the National Health Interview Survey. It probably costs as much as the National Health Interview Survey just for California. Wisconsin has had a Health Interview Survey. Massachusetts has had experience. Something like NHANES is so expensive per person that it probably would not be appropriate or necessary to do it in the full level of detail, but there were intermediate models.

Mr. Atkinson suggested looking for ways to facilitate cost efficient best practices shown to produce results counties and localities need, especially with respect to small area statistics. Dr. Knudson-Buresh remarked that it was cost prohibitive for states to do things. Trying to use a national survey at a state level (or a state survey at the county level) to make comparisons, the sample size could be too small and the variability in the CPS data unbelievable. Mr. Atkinson suggested that part of their charge as a collective might be to better educate policy makers and those working in health data to the differences in data and different kinds of interviews. Dr. Knudson-Buresh supported states having the flexibility to make decisions about having county level data available and investing or joining with federal partners to invest in the HIPAA survey.

PANEL 3: Stakeholders for Health Information

• Thomas Burke, Ph.D., Johns Hopkins School of Public Health

Dr. Burke, an associate professor at Johns Hopkins School of Public Health, spoke from multiple perspectives: (1) as a researcher in environmental health involved with the practice community, particularly on the state and local level, trying to address national environmental health issues; (2) as a former deputy commissioner of health from New Jersey, where “you can’t practice public health without being immersed in environmental health issues and concerns”; (3) as a principal investigators for the Pew Environmental Health Commission, which was winding up their business and had prepared a transition report to the new administration. Dr. Burke outlined the process they went through and underscored his conclusion.

Speaking as someone who spent ten years as a regulator in the environmental agency, worked as a deputy commissioner of health, and another ten years researching better ways to understand links between environmental health, the environment and health, Dr. Burke said public health surveillance is absolutely essential as a core function of public health. Yet environmental health lacks even the basic tools to begin to understand the impacts of environmental exposures on public health. He said, “we in public health are very disconnected” from the practice of environmental protection in this country and it showed. Environmental protection policies do not adequately consider public health endpoints, we don’t know if we are doing the right thing because we don’t have the public health metrics essential to tracking progress and demonstrating effective prevention strategies.

Dr. Burke said the process they had been through was very much shaped by his experience as a public health official who chaired the advisory board to the director of the Center for Environmental Health and served on the Directors Advisory Board at CDC. Environmental health in this country, he noted, is often a stepchild of the broader public health agencies. With the rise of the Environmental Protection Agency and the shift toward a regulatory command and control approach, those on the federal level have been detached from this process. On the state and local level, the practice of environmental health is probably the most vexing, under-funded, demanding aspect of the day-to-day operations of county and state health officials—particularly in industrialized states, where major issues are emerging and we have to balance the tremendous costs and demands of implementing environmental protection with a sample of health practice.

The commission tried to understand “what is out there,” in terms of environmental health tracking—what we know about sources of exposure, actual exposure levels, and health and disease endpoints that should concern us. Working with the states through the Council of State and Territorial Epidemiologists and all relevant agencies, much of two years was spent trying to understand the national infrastructure. The picture that emerged showed that, on the public health side, through the infrastructure we have not plugged in the information public health professionals need for environmental health.

Dr. Burke described his involvement, for years, with concerns about the impact on the environment and the health of a broad part of south and southwest Philadelphia. Public health officials and citizens were concerned that high levels of exposure around the major refinery complex (similar to complexes in Texas, New Jersey and many places) were reflected in high mortality and illness rates gleaned from cursory surveillance. Hopkins was asked to sort through what could be learned about exposure and connections to health and craft a prevention strategy. Dr. Burke noted the quality of the national program led by the expansion of SEER and the funding of state cancer registries, but added that cancer and total mortality were blunt instruments in terms of understanding the impact of the environment on health. People were concerned about asthma and neurological, reproductive and endocrine endpoints; information was emerging from toxicology in other research fields supported through NIH, but translation was not available in environmental health. Communities now have access to information on initiatives through national environmental strategies (e.g., the National Right to Know components of the Superfund legislation), but Dr. Burke said the public health side of understanding exposure still “falls down.” State epidemiologists are stymied in addressing concerns about contamination from DOE, military and industrial sites as well as early environmental health issues of density and housing. Dr. Burke told of serving on the National Academy Mercury Panel, trying to look at risks of exposure to the population (neurodevelopmental effects) and finding that nothing was known about exposure to the highest risk groups. He said there are many more examples.

Dr. Burke said he had come that day to talk about making a connection and urged the Workgroups to include in the information infrastructure some partnership with other agencies in occupational and environmental health. Together, he urged, they could build upon the fledgling initiatives of NHANES, the National Exposure Report Card, CDC, and NCEH to understand population exposures from environmental exposures.

He encouraged the groups to recognize the need to not just offer a federal barometer for certain key indicators of health, but to serve the core functions of public health at the state and local levels “where public health is practiced” by giving state epidemiologists tools needed in environmental health.

Dr. Burke noted that the PEHC transmission report outlined tracking of chronic diseases on the state and local level as dismal. The desire was not lacking, but Dr. Burke said the connections with the healthcare community required to tap in the data resources were not there. Intellectual and technical guidance were also needed. Dr. Burke emphasized that state and local officials had to understand what the appropriate endpoints might be and what kind of technology could be used. He said the tremendous access to information accompanying the growth of the Internet demonstrated the potential for environmental health. A strategy had been put together and pilot programs could begin to tap into important health endpoints to build a national network of environmental health tracking. Valuable partnerships with other agencies could be developed, advancing the way environmental health was practiced.

Dr. Burke concluded that with devolution of the role of the states and of locals in regulatory change, information resources were needed so public health might have educated decision-making. A number of huge regulatory decisions in environmental health would depend upon building that infrastructure (e.g., emerging and ongoing issues like West Nile spraying on the East Coast where there is “absolutely no regard for the impacts of the spraying, but pretty good tracking of the infection.”) Dr. Burke encouraged the Workgroups to include the states, support what they are doing, and, as architects of this system, ensure that that there are opportunities for connections.

• Richard Nugent, M.D., State of Arkansas Health Department

Dr. Nugent spoke on behalf of the Association of Maternal and Child Health Programs, a Washington-based advocacy group that sought to improve the health of women and children, adolescents and families. Following the Title V legislation of the Social Security Act, MCH brings together national leaders in maternal and child health, the state of Arkansas, and local infrastructure including the academic community. Dr. Nugent, the Title V medical director in Arkansas, discussed how maternal and child health stakeholders perceive their needs for data and information and their commitments towards developing data and information resources. The AMCHP works closely with federal partners, especially the Maternal and Child Health Bureau in DHHS and HRSA. The MCH Bureau supports AMCHP in developing national meetings; CDC and other federal partners also pursue activities together. A number of advocacy groups with specific interests (March of Dimes, Birth Defects, Family Voices) interact with AMCHP. The health department is decentralizing from the state to the regional level; five health-wide, community-oriented planning processes are currently being implemented.

Dr. Nugent discussed how these groups proceed and their needs for data and data use. He explained the intent to keep their view broad by viewing all the data sources and information to ensure they encompassed all issues relevant to mothers and children. Their goal was to characterize and quantify health problems relating to mothers and children and involve individuals, institutions and governments at all levels in the process of assisting and improving their health. The AMCHP seeks successful solutions to their constituents’ health problems, while conserving limited healthcare resources. The Government Performance and Results Act requires MCH funded programs to marshal their data, measure health status among mothers and children and their progress towards goals and objectives.

The data must be timely and accurate. It increasingly needs to be disaggregated by small geographic areas and subpopulations in order to understand better the needs of specific groups within maternal and child health. A data system that can assess programmatic and health systems’ interventions at the state or community level needs to be drawn from a variety of sources: vital records, provider management information systems, bill-paying mechanisms, population and consumer surveys.

Data must be marshaled and presented to support: community diagnosis and needs assessment processes, consensus building and priorities, developing measurable objectives and measuring progress. The data must be provided in the context of technical information about the data itself: what was the source and purpose for the data set, and how does that impact on the ability to use that data in an analysis; what is the linking process of putting one of these data sets together; what are the implications in the way the data is linked or used; what analytical issues arise and are pertinent in any particular area (e.g., perinatal epidemiology or population epidemiology, infectious disease). Many different particulars of analysis act on the ability to draw inferences.

Data sets will be made available to do broad things: e.g., needs assessments, surveillance and follow-up. They also need to be approachable so someone with a specific question and problem can dive into that data and surface with information relevant to that need.

Dr. Nugent discussed two ways MCH develops and uses its data resources. The MCH Bureau uses Title V funding through Special development of Regional and National Significance to provide resources for states to develop their own building use capacities. Training grants fund professional training emphasizing the importance of data use. CDC supports the development of MCH senior epidemiologists with national meetings where individuals with these skills and interests expand their professional capabilities.

He discussed activities in Arkansas as an example of how, in many states, a commitment is growing to broad use of data in healthcare planning. Home Town Health Improvement, a health-wide, community-based organization and planning process, which will eventually roll-out to every county, (1) presents stakeholders with a broad set of data; (2) tries to provide the data necessary to their special interests, planning and priorities; and (3) gets communities to own the problems in their own systems and take responsibility for development of healthcare systems.

Dr. Nugent said decentralization to the regional level was intended to bring statewide organizations’ decision-making about resources closer to the community level. He affirmed that AMCHP constantly looked for ways to partner with others with similar interests and resources to contribute.

• Michael E. Bird, The American Public Health Association

Mr. Bird commented that the potential impact of NHII in the field of public health was significant. In its willingness to accept traditional approaches to handling data, public health failed to take advantage of emerging technologies. He identified a number of applications that he said would significantly improve the performance of public health systems and the professionals that staff them: (1) improving the ability to identify disease patterns and trends on all levels, (2) developing reliable systems for assessing the health status of a community and defining factors for maximizing this status, (3) enhancing the public health system’s ability to assure that its programs and resources are used in the most appropriate manner, (4) permitting evaluation of public health programs and activities with a view towards improving them, (5) providing a firm base of data for the development of effective health policy and legislation, (6) assisting the processes of informing health professionals and the public about major public health issues and the most effective mechanisms for addressing them, (7) improving communications between federal, state and local public health systems on common issues and concerns, (8) becoming an essential part of the public health infrastructure in the event of a bioterrorist act or any other public health emergency; as well as providing data for conducting public health research.

But before NHII could be endorsed with enthusiasm, Mr. Bird said it needed to demonstrate that it could: (1) be structured and coordinated to deliver on its promises in the long term, (2) be reliable so users could be confident it would deliver appropriate level of confidential data, appropriate formatted, when required, (3) maintain the data collected at all times, (4) be user friendly for all legitimate users of its data, (5) be implemented in a way that builds on emerging trends in the use of health-related data, (6) be evaluated on a regular basis.

Mr. Bird recommended creating a national advisory board that represented all the major user groups. Noting the private sector had no problem identifying its customers, Mr. Bird said the healthcare community had an obligation and responsibility to see that what they do is relevant and appropriate to each population. He cited the increasing role American Indian and Alaskan native populations took on in assuming responsibility for healthcare for their people. And he pointed out the need for federal and state entities to recognize the issue of tribal government and sovereignty and collaborate with tribal governments, health programs and departments.

He said turning around the disparity in all these communities required looking at each other as partners and collaborative methods. He said APHA and DHHS had launched a ten-year initiative to eliminate disparities; and they looked to the Committee for support.

Discussion.

Asked who should pay for and set up NHII, Mr. Bird responded that all of us are stakeholders and have an obligation and responsibility. Public health was the real basis of a healthy people and a healthy, strong nation. He noted that in her most recent book on global health, Laura Garrett linked what happened in the former Soviet Union to the demise of their public health infrastructure. He said it was the responsibility of the healthcare community to make people aware of what was happening and of potential negative consequences of not investing in public health and the people.

Noting that the maternal and child health systems had led the way in developing integrated information systems related to service delivery and monitoring, Dr. Lumpkin asked how that role of integrated delivery could be brought into a Web-enabled, e-health environment. Dr. Nugent said in Arkansas every local health unit was on-line and databases were being moved on to the Web page so that each community could access information. Confidentiality was protected by putting a number in the cell where the number was too small. They were also developing a capacity to train people in the community to delve into that data. Dr. Burke learned through the Pew work that resources at the state and local level were extremely limited. He implored the groups not to expect that this could happen without strong federal guidance and partnerships with users in the private sector; the public health infrastructure does not have the resources to make this happen from the bottom up.

Dr. Deering asked Dr. Burke if there were things in the Pew Environmental Health Commission report that conveyed his thinking about how the network he had sketched would fit into clinical linkages and public-oriented information flows. Dr. Burke said the report focused on restoring and reinvigorating the public health infrastructure, which could only be done through partnerships. Although there had been talk about the potential for partnerships between the care providers and public health, those linkages had not happened as effectively as possible. It was still difficult to get surveillance information from providers in a way that was usable on a community or state scale. Their report addressed incentives that were there, but he noted there were impediments, starting with confidentiality. Right now, appropriate incentives were not there for those partnerships to develop. One shortcoming was the lack of good environmental health models. Dr. Burke said he would provide a copy of the report, which talks about the potential for the multidirectional information flows and addresses impediments. He said the way to begin was to build upon how impediments had been overcome in the more traditional sense of infectious communicable disease and move forward into chronic diseases and then exposures.

Dr. Deering noted Mr. Bird mentioned that among the points APHA hoped to see was a national advisory board to guide the future course of NHII. She reiterated that NHII was not an “it” that existed, but a virgula distributed decentralized de facto. She asked if APHA interpreted NHII as an it and if he would elaborate on the nature of this advisory board. That morning, Mr. Bird replied, people asked for an implementation process, which implied an “it.” Feedback had to go to somebody.

Noting the interim reports address the rights and protection of individuals, Mr. Bird mentioned his experience in Indian communities and asked about the rights of groups in terms of the protection of their information. He said that the Hantavirus outbreak in New Mexico and Arizona took on the connotation of something happening “out there with Indian people” and emphasized a need to be concerned about labeling and misuse of information.

Agenda Item: Public Comment

• Dr. Gwyn Jones, the National Rehabilitation Hospital Center for Health and Disability Research

Dr. Jones testified from both the perspective of a member of the disability community and as a healthcare researcher in disability and health research. She pointed out that many data collection methods are not accessible to them, especially since some big national surveys have gone to computer-assisted personal interviews. Dr. Jones doubted that many would fill out healthcare information on the Web. She said they worried that information might be used to discriminate against them.

Dr. Jones remarked that the Web is not always a disability-friendly environment; not all Web sites are accessible. She pointed out that documentation and research tools also needed to be accessible for people with disabilities. Dr. Jones encouraged focusing more on the person-environment fit when designing healthcare information. Consumer information about provider offices’ accessibility needed to be available on the Web. She suggested that health plans, which had to do that assessment for Medicaid, might offer it on their Web sites. Similarly, the environment for the provision of healthcare services was not always consumer friendly. She noted that obstacles such as attitudinal stereotypes among healthcare providers and physical inaccessibility of diagnostic and exam equipment needed to be identified so interventions could be made. Healthcare information on prevention and access to health promotion programs was also needed to understand how people with disabilities perceived health promotion affected them both physically and in terms of their lifestyle.

Dr. Jones emphasized the need for a method of tracking the development of secondary conditions in order to design better preventative interventions. She identified the need for somebody to fund a Disability Framingham Study to track secondary conditions and health promotion.

Dr. Jones also commented on the need for data on how people with disabilities use alternative care as more people turn to it and it gains favor within the medical community. The literature would support that they might use it more than people without disabilities. She observed that this could be both beneficial and detrimental.

• Armin Weinberg, M.D., The Intercultural Cancer Council

Dr. Weinberg, co-founder of ICC, read testimony on behalf of Dr. Gilbert Friedell, who was unable to attend. Dr. Friedell’s testimony focused on the collection and analysis of cancer information from racial/ethnic minority and medically underserved populations. Improvements in cancer incidence, mortality and survival have been reported for the U.S. population as a whole, but as an Institute of Medicine report, “The Unequal Burden of Cancer,” made clear early in 1999, some populations—notably minorities and the medically underserved—have not seen improvements. The report indicated the cancer database does not adequately reflect the burden of disease borne by these populations and called for enhancement of systems of cancer data collection and analysis.

The report also noted that the NCI’s Surveillance, Epidemiology and End Results (SEER) program provided high-quality data from the populations it covers, providing an approximation of national cancer incidence and survival rates. However, the report pointed to minority and medically underserved populations not covered by SEER, including both white and minority populations of low socioeconomic status. The report recommended SEER be significantly enhanced, including expanding its program coverage.

The report also recommended enhancement of the Centers for Disease Control and Prevention’s National Program of Cancer Registries, both adding to a national cancer database and providing states and local areas with the database necessary for the development and implementation of effective cancer control programs.

In further response to the IOM report, with the support and participation of the National Cancer Institute, Centers for Disease Control and the American Cancer Society, ICC convened two data Working Groups to discuss improving data sets concerning cancer in ethnic minorities and the medically underserved. Workgroup members represented minority and medically underserved populations and prepared responses to five detailed questions focusing on data needs required to provide a true picture of the cancer problems confronting these populations and the data collection barriers that need to be addressed.

The group made 13 recommendations for improving cancer data collection and analysis for these populations. They include: the collection of socioeconomic status information on individual cancer patients, the development of methods to overcome data collection communication barriers, collection of nativity data, involvement of the community in data collection, development of culturally appropriate cancer control materials and survey instruments, and training epidemiologists and related professionals from minority and medically underserved communities. Among the action items were some relating to the need to collect SES information concerning individual cancer patients before these patient data are aggregated for analysis. Detailed reports will be available on an NCI Web site. Information can also be obtained from ICC.

Dr. Friedell’s testimony noted the need for data research to develop strategies for dealing with evident inequalities in cancer care made apparent in the National Cancer Policy Board report. The Workgroups were encouraged to consider the recommendations of the groups convened by the ICC in order to assure inclusion of cancer data from minorities and the medically underserved in a national health database.

After presenting Dr. Friedell’s statement, Dr. Weinberg observed that there was a significant cost to not providing an infrastructure that embodied a national perspective. Clearly, there was a need for data that could be used in local programming, allocation of resources, and education. Not providing that infrastructure at the national level, had state and local implications—the cost of missed opportunities and programming. Dr. Lumpkin agreed on the issue of cost, but noted that unfortunately, Congress or state legislature do not recognize the cost in the community. Any data that would help quantify the cost of not acting would be useful.

Agenda Item: Committee Discussion

Dr. Friedman reported that, based on the December planning meeting, the 21st Century Workgroup would actively flesh out an outline of the emerging report, which would go to members of the subcommittee and others from NCHS. A rough first draft outline would hopefully be available for feedback by the November meeting. Dr. Deering clarified that the NHII Workgroup decided at the December meeting to draft another short report and aimed for an approval process at the June full Committee meeting for presentation to the Secretary. This short report would introduce upcoming works of both groups and identify broad issues and components that would be looked at in depth. She reported the staff intended to have something for discussion in February and would need and appreciate input to keep them moving forward.

Dr. Zubeldia noted that the difficulty of conceptualizing what this was, other than an “it” had been threaded throughout the hearings on NHII. He suggested this might be expressed as a set of communication or message standards that allowed the interchange of messages needed between different parties, so people did not imagine a global database or a natural telecom infrastructure. Dr. Friedman concurred, noting they had similar difficulties in terms of health statistics. He said those two words were being using in a multitude of ways simultaneously. With NHII, they had a definition; he suggested they could flesh out each phrase with examples. Dr. Lumpkin remarked that the scenarios should be kept. A reporter from The Wall Street Journal had commented on their clarity and how they helped her understanding. He said he liked Dr. Friedman’s idea of trying to enhance their definition, but remarked that he was struck by how they were talking about not just enabling technology to transform healthcare, but transforming healthcare to put the person in the middle. What NHII did was use currently existing and soon-to-be-developed technology to enable an individual to be at the center and in control of their health and healthcare.

Dr. Deering recalled that they had talked about taking a longitudinal life events approach, looking at determinants of health models. One proposal had been to come up with an additional scenario or use a more longitudinal story that depicted the interplay with the data, public health entities, and the clinical encounters as a linking factor. Interrelationships and benefits could be seen through a more real-life orientation. She suggested reviewing the scenarios to see if the concept of benefits might be crafted more direct and emphatic.

Ms. Greenberg said she was struck by the testimony about burden and how diverse these people and their lives were. She remarked on the sense that no one was going to have time for all this, and the realization that, when things were so disorganized and unobtainable, this vision could actually help people be more directed and targeted.

Dr. Deering observed that if the title was changed to Better Information for Better Health and NHII was mentioned less, it might be easier for people to see this was not a creation to be planned, implemented, and measured. She said she understood there would be room for aspects of the pilot project development of measuring, oversight, and taking the calls regularly—but that this was not to be a federal initiative with such well-defined parameters.

Dr. Lumpkin noted that HIPAA was a good example of that process. As much as people talked about the administrative transaction standards, those were not federal transaction standards. The standards were developed by standard development organizations. Government would do some things; they all heard people wanted them to play a role. But private sector groups had a prominent role, too. .

Dr. Friedman noted that at the February meeting the group needed to look again at the process they would use for developing the subsection of the report that dealt with recommendations and a plan. They had heard suggestions that morning and at the December joint meeting and now needed to decide what steps to take to get feedback and have an interactive process.

Dr. Shortliffe remarked that the effort they were describing could and ought to influence one federal project, the Next Generation Internet (NGI) research agenda. Healthcare could help shape that agenda and the way the Internet evolved. Noting that the security and authentication concerns of e-commerce were simpler than those in healthcare, Dr. Shortliffe suggested they ought to be pushing the security of the research agenda of the Internet. Describing the Internet of the future as a biomedical research topic, Dr. Shortliffe envisioned a much more participatory HHS role. Biomedical research was not just the Human Genome Project; he noted the Department of Defense recognized long ago that research in communications, computing and infrastructure was their business, because it served the purposes of their mission. And so they supported basic research in the 1960s, and today we have the Internet. He emphasized that the healthcare research community and those at HHS and elsewhere who think strategically about the role of information and support of healthcare should be much more visibly involved in making this basic investment in information technology and communications and in the Internet and its evolution. In addition to medically oriented demonstrations (e.g., telemedicine over Internet two speeds) he asserted there was a role for healthcare related investment in the NGI underlying research activities.

Dr. Zubeldia observed that they had talked a lot about the role of government and the public health system, but also needed to address how it would happen in the caregiver dimension. Vendors were both delaying and working feverish under HIPAA; governing them in the process was important. Some form of personal health appliance needed to be developed, and Dr. Zubeldia suggested it was not too early to bring in those that would participate in creating the technical infrastructure for the healthcare professionals and for the consumers, so they knew what new markets were being created and could “jump in.”

Mr. Hunter remarked that only in a transition would they go from talking about “what is it” to “what it is.” He expressed some discomfort with moving to a title for the next report that was so broad it excluded infrastructure and other things focusing on steps. He advised that they could differentiate the it of “what it is that needs to be done” and the logically coherent set of steps, plans, policies, standards and architectures from the “what it would be” that they sought. Mr. Hunter maintained that they wanted “what it is that needs to be done” in the report. Dr. Shortliffe commented that the proposed title could be interpreted as a one-way view of the infrastructure as a delivery mechanism for information, but what they were actually discussing was the vibrant two-way nature of the infrastructure and the Internet. He noted that delivery of information back to the government was inherent in many of the public health interactions and suggested the groups might want to also bear in mind HCFA submissions of bills and electronic funds transfers on the Internet in coming up with a title.

PANEL 4 Stakeholders for Health Information

• Amitai Etzioni, The Communitarian Network

Mr. Etzioni approved of the reports’ philosophy that recognized that privacy is implied and needs to be balanced and that the proof on claims is public health, which is as important as privacy. He remarked that the new policy rules issued by the Clinton Administration changed in the final resolution in a crucial, unfortunate way with the assumption that the burden is on each individual. Mr. Etzioni noted that many studies indicate that when it comes to healthcare, people do not always understand what they have been asked and can be misled and confused. He said another reason for institutionalized protection was that the main danger came from the private sector, not the government. He commended the reports’ sensitivity to the need for protections.

Mr. Etzioni said he differed with the notion of not yielding to public safety; defining which public safety considerations would take precedence might be difficult, but public safety was a legitimate concern. He commented that he served as a staff director for a commission investigating nursing homes and said that while most the work with fraud and abuse in Medicare could be done as depersonalized data, when it comes to criminal proceeding “you have to go into the file.” He stated that in saying there would be no unreasonable search and seizure the Fourth Amendment recognized there is evidence.

Mr. Etzioni said he was concerned about the capacity to combine and depersonalize data with all personal data. He recommended the creation of six regional, not-for-profit centers funded and supervised by a committee entrusted with the keys. Researchers would combine de-identified databases. The data would not be at the centers. Another solution he mentioned was one-way matches where the data could only be identified one way. No one else could follow the line back; but it could be combined from any system.

He encouraged the Workgroups to consider the law of technology, which he described as a tug of war between attack and defense mechanisms with each taking precedent for a while. He said the most impressive defense tool, high-powered encryption, assured privacy more than ever before. Noting in California much was capitated, he recommended the groups discuss how investment systems affected this issue.

• Bette-Jane Crigger, Ph.D., The Hastings Center and project editor for the eHealth Code of Ethics

Dr. Crigger departed from her prepared text to speak about codes of ethics for the health Internet and philosophical and ethical considerations that under gird the more often legal and political conversations about privacy. She depicted these codes as identifying moral values at stake in a domain of activity and articulating broad principles of conduct that serve and express those values. She used privacy as a test case, saying she hoped her remarks illustrated the thinking that should go on about other salient issues and values related to the health Internet.

Dr. Crigger observed that Americans today have a seemingly contradictory stance towards privacy. We are deeply, sincerely concerned that others may seek and obtain personal information about us. And, at the same time, we are curiously profligate about revealing information ourselves (e.g., over our cellular phones and on the Web). Both stances, she said, seem rooted in the Western conception of the self as autonomous agent. Each of us wants to have meaningful control over how we are known in the world.

She noted that discerning what constraints community might rightly impose is an ongoing challenge, philosophically and practically. As both interim reports and the Institute of Medicine’s report, “Protecting Data Privacy,” make clear, there are important individual and public health reasons to allow access to and use of potentially identifiable health information, even against individual preference.

Dr. Crigger remarked much had been heard that day about choices and rights and harms that might befall us when confidentiality of personal health information was breached: embarrassment, stigmatization, and discrimination in employment or insurance. Such breaches violate the underlying notion of what it is to be a self. Less had been said about exploitation. The use of personal health information for marketing purposes, especially when such information was exchanged without the individual’s knowledge or consent, reduced the self to a commodity. Such affronts to dignity are recognized and condemned by the European Group on Ethics in Science and New Technologies, which asserted, “Personal health data form part of the personality of the individual and must not be treated as mere objects of commercial transaction.” In comparison, the privacy and confidentiality provisions of HIPAA essentially allow ready access for marketing purposes. Individuals may opt out only after they have been contacted. Dr. Crigger said harmonizing HIPAA with the European privacy directive and honoring the safe harbor principles that FTC had been developing was going to be a real challenge.

Describing a scenario of a resident and attending physician discussing a patient in a crowded hospital elevator, Dr. Crigger illustrated that, absent a robust culture of respect for privacy, neither technology or rules, regulations or sanctions, could protect a patient’s privacy. She emphasized the human dimension of the challenge of protecting privacy and underscored the need to cultivate a faculty of discernment among everyone handling personal health information. As the IOM noted, “regulations and guidelines are important to provide norms, but they must still be implemented with the judgment and practical experience of individuals....”The IOM went on to stress the importance of education in this process. Dr. Crigger said she hoped to see ongoing efforts to educate members about privacy concerns that address more than just regulations and organization-specific policies and practices. Ideally, protecting privacy should be an ingrained habit of thought, not merely a technical application of rules or protocols.

Dr. Crigger suggested codes of ethics could help create an environment in which ethical behavior (conduct that conforms to and expresses the group’s core values) was the expected norm. Codes provided a means for a profession or group to collectively acknowledge its responsibilities to fellow members and to those the profession served. Codes of ethics demonstrate the group’s commitment to ethics and offer moral guidance. Codes do not usually offer decision algorithms, but remind us of ethical considerations we must take into account in deciding how to act.

Dr. Crigger discussed codes of ethics recently created for the health Internet: Health on the Net Foundation’s HON code, High Ethics’ e-Health Code of Ethics, and AMA’s Guidelines for Medical and Health Information Sites on the Internet. Noting this looks like a fragmented community, she said, in fact, there was some uniformity and collaboration and the three codes’ focus, audience and goals overlap in significant measure. The overarching goal shared by all these codes was to create a trustworthy environment for those using the Internet for health-related purposes. All three incorporate among their core values the obligation to respect the privacy of individuals, preserve the confidentiality of the information individuals provide, and recognize that privacy is not the only value at stake—synergy among fundamental values ultimately creates conditions for trust. Dr. Crigger discussed the issues identified by the e-Health Ethics Summit as fundamental values at stake on the health Internet (which includes not only informational Web sites, but everything that transpires across the Internet in terms of health—e.g., data transfers for billing or public health purposes). The summit found open disclosure of the purposes, sponsors and content of the site fundamental to trust. Other issues were: (1) honesty in presentation of one’s self and representation of products or services; (2) quality and the interrelated issues of data integrity, trust, and privacy; (3) responsible partnering—subscribing to the same set of values and best practices, assuring that users can trust the environment they go into; and (4) applying the fundamental ethics and values of the medical profession to on-line healthcare.

Dr. Crigger pointed out that efforts to create codes bring together the various profession-specific codes of ethics already governing participants (business ethics, the AMA’s code of ethics, computer programmers’ and other IT codes of ethics) into an overarching framework germane to all these specific tasks, activities, and players and then strives to make these values and principles intelligible to end-users who are not members of the professional communities.

Codes have to be intelligible to, protect and serve the interests of all stakeholders simultaneously, and implementing them is a huge task. Universal non-profit code keepers who vetted sites would be an enormous undertaking—one, in many ways, contrary to the democratic, creative, open ethos of the Internet. Dr. Crigger said preferred solutions would be to find ways to use the resources of the Internet and be self-policing, with each individual and entity subscribing to and upholding the codes in specific ways germane to their particular activities.

She said the e-health code was drafted to be universal, defining the overarching moral framework as it is applied to sites worldwide. The high ethics code was targeted to the activities and environments of the for-profit dot.com commercial providers and particular concerns about business transactions and partnering that occur in that environment. The AMA guidelines (which focus on expectations it holds affiliated sites to, as a professional medical organization and publisher) are more specific. She described each as an exercise in specifying and interpreting what a principle of candor means in a particular context.

Dr. Crigger suggested that the process these codes of ethics offer is one of the best ways we have of helping to assure that privacy and other values are honored: “Technology won’t do it. People supported by a culture aware of these values, can.”

Mr. Etzioni said the public might not be as far from a balanced point of view about privacy as some of the advocates. He said they were aware that this was a complicated picture, and he did not see any problem in the eyes of the public.

Dr. Shortliffe said he thought consciousness raising was healthy. He supported adherence to codes of ethics and the institutions that took recommendations seriously. But he was not sure this would help get around the need to reassure people that their data really were safe. Dr. Crigger agreed. She said it was a piece of the puzzle that could support other efforts and create environments of trust. Would they ever be perfect? No. Did they need regulation in addition to self-regulation? Absolutely. She said we were worse off without consciousness raising, without individual responsibility as members of communities. Regulations could set a floor below which we could not fall. Codes of ethics could set an aspirational target for where we wanted to go. She acknowledged that she did not want to be a great advocate for the Internet; saying she was deeply troubled in many ways. Part of what the Hastings Center did, she explained, was to try to look at all sides of arguments, honoring the perceptions and not finding anyone perfect. She reiterated that we would all be the poorer without this kind of aspirational code.

Dr. Lumpkin thanked the participants for a very interesting day of discussion around the issues of privacy and next steps. The meeting adjourned at 4:00 p.m.

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

/S/ 4/19/01

___________________________________________________
John R. Lumpkin, M.D., M.P.H. Date
Chair, NHII, Workgroup

/S/ 4/23/01

____________________________________________________
Daniel J. Friedman, Ph.D. Date
Chair, Health Statistics for the 21st Century Workgroup