1997 Partnerships for Networked Consumer Health Information Conference
Consumer Health Information: Status Report
In his memorandum to Secretary Shalala of March 8, 1995, Vice President Gore asked the Department of Health and Human Services (HHS) to develop recommendations for federal activities for providing enhanced consumer health information (CHI) through the national information infrastructure (NII). In response, the department is building on existing efforts and identifying new opportunities in online access, coordination, public- private partnerships, policy leadership, R&D and evaluation, and special population projects. These efforts and proposals are based on the following principles:
- The long-term goal is universal access to health information at the "point of need." The individual at home at a personal computer wanting information about healthy behaviors, a patient in a clinic needing information about treatment options, a blind person needing information about services, the newcomer in the community looking for information in the public library--all of these should be able to find what they need, when they need it, electronically.
- HHS is especially concerned about vulnerable populations, who are most at risk for illness and premature death and are likely to lag behind in access to technology. In order to reach these and other populations more effectively, the Department must partner with other Federal agencies and State and local health departments, and encourage private sector organizations and companies to address these groups as well.
- Cooperation and public-private partnerships should guide these efforts. Federal resources are limited. Voluntary health agencies, health care providers and payors, and commercial information services are all major stakeholders in the CHI endeavor. Their respective roles need to be clarified. In order to ensure efficient public expenditure, Federal agencies should partner with the private sector to facilitate innovation and development. Care should be taken to preserve the government's reputation for producing unbiased consumer health information.
- The results must be practical, cost-effective, and flexible. The NII and its applications are evolving rapidly. We must balance advanced technological solutions with actual customer needs and available resources.
Collaborative Activities to Improve Online Access
There is a great deal occurring throughout the Federal Government to provide electronic access to information for Americans. Attachment A lists some of these ongoing activities sponsored by individual Federal agencies and offices. On March 27, the HHS Internet Laboratory, part of the department's Continuous Improvement Program, sponsored the "HHS Net '96" showcase, which highlighted many of the Department's innovative online products and services. (See Attachment B.) The National Library of Medicine recently launched Internet Grateful Med, an easy-to-use application for searching the vast bibliographic database of NLM.
However, this wealth of information brings problems. Consumers frequently complain about the difficulty of navigating through myriad collections to find information about a given problem. They have difficulty getting directly to full-text publications.
Their searches often turn up information that is redundant, conflicting, or out of date. As the demand for and supply of electronic health information grow, these problems will increase. There is a need for navigational assistance. Simplifying access to the health information that is already being provided by many different Federal agencies will enhance its availability and use, and represents a useful and concrete service.
HHS is working to make it easier for consumers to find the information they need both internally, through its home page, and across agencies, through electronic linkages and specific CHI development efforts.
The HHS Home Page. To facilitate coordinated access to HHS information resources, the Internet Lab developed the HHS Home Page. It includes a sub-page on Consumer Information.
The current HHS Consumer Information web pages present good resources on a limited number of topics. However, HHS is a large department with 10 operating divisions, and resources on any given topic may be held by several different divisions, making the task of locating them all a time-consuming one. In order to increase the numbers of both resources and topics presented on the central HHS web page, simplify access for the public, provide sites offering information on multiple topics in the most flexible way, and maintain this information in an efficient way, HHS is developing a database of its Internet resources and classifying those resources according to a standard thesaurus of subject terms.
The public can easily choose subjects from a popular topics list or a complete list divided into alphabetical sections. A list of resources is presented in response to the selection of a subject; selection of any of these resources accesses the database to return a summary, a direct URL for Internet access, and related subjects to explore. At this point, selecting the hyperlinked URL will take the user directly to that Internet resource, which can be located at HHS site or at sites operated by HHS contractors (e.g. clearinghouses) or grantees. (See Attachment C)
Future plans. HHS plans to enhance public access to health information across the Government by merging this Internet resource database with a database of full-text consumer publications (under development--described in the Gateway project below), and possibly the database of 1,000 government agencies, national associations, and other organizations providing health information and referrals to the public that is now maintained by the National Health Information Center (NHIC), an HHS-funded clearinghouse. NHIC's web page was recently named a "top 5%" site by Point Survey.
Gateway to Federal Consumer Health Information. In 1995, an interagency project, "Libraries as Gateways to Health Information," identified a core set of CHI materials from nearly 30 clearinghouses and developed a kit for public libraries that included special finding aids for librarians and patrons. In the evaluation of this pilot print project, over 75 percent of the libraries participating desired that the health information be made available in electronic form. In cooperation with the HHS Internet Lab, the interagency group is now developing a prototype electronic Gateway to Federal Consumer Health Information. (See Attachment D.) Oversight is provided by an intra-HHS committee, working with public and medical librarians. The prototype Gateway is now undergoing alpha-testing. Based on the results, a proposal for further development and a budget will be prepared.
The Gateway seeks to simplify access to key health materials while alleviating the problems of "information overload," duplication, and currency. It brings together in a single database hundreds of brochures and other publications on dozens of health topics--the newest versions of the most requested publications. Through a keyword search, the user's inquiry will be routed through all the publications in the database (not just those of one agency at a time). The Gateway will contain both summaries and full-text files for hundreds of health publications produced by the U.S. Government. Each summary gives a brief description of the publication to help the user decide if (s)he wants the information; each is linked to the full-text files that can be downloaded. The summary also tells how to contact the sponsoring agency--by telephone, mail, or the Internet--to order a printed copy of the publication or get help in locating more in-depth information on the topic.
The Gateway does not seek to limit access to the full range of online information. On the contrary, it proposes to provide a "first stop" which may in fact satisfy the user's needs, with links outward to related Federal sites. The project will assemble a core set of material in digital form and develop an interface that will help a person access a reasonable volume of text materials. Through links to specific sites, the user seeking more information can access as much or as little as (s)he desires.
Future plans. While the prototype contains a limited number of HHS publications, the Gateway could be expanded to include a much wider representation of HHS material and key publications from all U.S. Governments departments and agencies. This unified core collection of Federal materials could be made available through the HHS home page and the home pages of all HHS divisions and other Federal agencies that have other health information on their sites. Each could customize it or add value for its own audiences. This collection would also be very attractive to private sector consumer health information providers because of its credibility and comprehensiveness. They too could add materials from other sources, including Federal materials not in the Gateway, and add value in other ways for their respective audiences.
The ultimate value of the Gateway will be determined by the scope of its contents on one hand, and by the simplicity of the user interface on the other. Both of these will require significant funding, which could come from public or private sources or from partnerships. A mechanism will be created to identify the most popular, timely, and non-duplicative consumer health materials from Federal agencies. Undoubtedly the first step will be nomination by the sponsoring agencies, who know which of their materials are most valued by their audiences. But selecting, organizing, digitizing, and maintaining the currency of the materials could be done through a contract funded by multiple agencies and guided by an interagency steering committee.
The interface will have to be extremely easy to use if the Gateway is to be helpful to people who have neither experience with database searching nor knowledge of the various terms that may be relevant for their questions. It should seamlessly link the user to full-text materials, the HHS home page database of HHS Internet resources, and the NHIC database of public and private health information and referral resources. In addition, it must be accessible for people with disabilities.
Enhanced Federal Coordination
In addition to simplifying consumers's access to health information, HHS seeks to coordinate activities within HHS and with other Federal agencies. These efforts build on the independent information mandates of various agencies as well as their respective strengths. But these efforts also recognize that we are often addressing the same audiences or providing information about issues that cut across agencies. The goal has therefore been to introduce agencies to each other--so that they can know what each other is doing-- and to new approaches--so they can do it better and more efficiently. With the development of the NII, there are additional opportunities not only to enhance the individual agency efforts but also link them more effectively.
HHS staff have convened Federal health information and education staff in informal meetings and symposia for nearly eight years. Five of these sessions have focussed on new communication technology. Recently nearly 100 Federal CHI staff learned from OMB about possibilities for promoting the integrity of electronic information products through trademarking and other less restrictive practices; and from the Postal Service about opportunities to participate in the WINGS electronic intergovernmental service delivery project.
HHS staff have co-chaired the Consumer Health Information subgroup of the Information Infrastructure Task Force's Health Information and Applications Work Group (HIAWG) since its inception in April 1994. A list of agencies participating in the HIAWG CHI subgroup is given in Attachment E.
Future Plans. The Department will establish an internal CHI workgroup to help strengthen and coordinate HHS activities, building on core staff from this Status Report's development team, the HIAWG CHI subgroup, and Partnerships steering committee. The workgroup will include representatives of all HHS agencies and offices with CHI missions, along with representatives from Public Affairs and Information Resources Management, and the Internet Lab. Representatives from other Federal agencies will also be invited to participate. The workgroup's key functions could include
- identifying, reviewing, and referring to key leadership any issues that require official action;
- overseeing the HHS consumer health information home page and ensuring its links to other Federal and private sites;
- developing, maintaining, and assessing an online inventory of HHS CHI products and services;
- overseeing the Gateway to Health Information project;
- developing and maintaining a Listserv linking HHS and other Federal staff involved in CHI;
- educating CHI staff about new approaches and opportunities;
- promoting collaborative efforts on cross-cutting issues such as search-engine development, quality and integrity, evaluation, and special populations;
- overseeing the third national Partnerships conference; and
- identifying and promoting opportunities for Federal-State-local and public- private partnerships (for both infrastructure and content issues).
PUBLIC-PRIVATE COLLABORATION: Partnerships for Networked Consumer Health Information
In 1994, HHS convened representatives from the public and private sectors to develop a series of national conferences to explore emerging CHI activities and clarify respective roles and responsibilities. The first and second national conferences, Partnerships for Networked Consumer Health Information, took place in California in May 1995 and May 1996. The 1996 conference was co-sponsored by the Robert Wood Johnson Foundation, the Annenberg Center for Health Sciences, and IEEE-USA. A copy of the conference brochures for 1995 and 1996 and a list of organizations represented on the steering committee are provided in Attachment F. The conferences also provide the context for more indepth analysis of key issues by public-private teams. In 1995, studies of consumer health information demand and delivery and intellectual property issues were developed for preliminary discussion at the conference and subsequent publication in the medical information literature. In 1996, small groups assessed issues of quality/integrity, cost-effectiveness, universal access, and health information community networks. Recommendations and reports will subsequently be issued by various partner organizations.
The partnerships conferences also include satellite videoconferencing and a "virtual conference" on the World Wide Web. The conference home page address is http://odphp.osophs.dhhs.gov/confrnce/partnr96/ .
HHS agencies are working directly with private entities like IBM's online Health Village project, America OnLine, and America's Housecall Network to facilitate the inclusion of HHS materials and information into these services.
Future Plans. The 1997 Partnerships conference will be held in the Washington D.C. area to facilitate participation by Federal decision-makers. It will identify areas where further recommendations are appropriate and showcase successful collaboration stimulated by previous conferences. As noted above, HHS will explore partnerships with the private sector to enhance access to the Gateway to Federal Consumer Health Information.
Policy Development
HHS staff authored a major white paper that identifies the key policy issues related to consumer health information and the NII. The Consumer Health Information White Paper was developed under the IITF's Health Information and Applications Workgroup (HIAWG--see above). It was circulated in Spring 1995, discussed at the May 1995 Partnerships conference, and is now being reviewed by the IITF's Committee on Applications and Technology. HHS staff have authored two other reports under HIAWG auspices that identify opportunities for CHI within broader health contexts. A third report published by HHS' Public Health Service includes public information and education challenges for the public health community in the information age. All were widely circulated. These reports are referenced in Attachment G, along with the full Consumer Health Information White Paper.
HHS staff have contributed information and insights for the CHI sections of two other major policy reports, the OTA report Bringing Health Care Online: The Role of Information Technologies (September 1995) and the Council on Competitiveness' Highway to Health: Transforming U.S. Health Care in the Information Age (March 1996).
Internally, HHS is developing policy and guidelines for Internet communications. This effort includes references to external communication activities such as CHI, although the latter is not a specific focus on this effort. The final reports will guide HHS leadership and the operating divisions in the development of structures and practices for optimum Internet use.
Future Plans. HHS will continue to track issues in this area and respond as needed: by convening interested parties, preparing white papers or other policy guidance.
Evaluating Online/ Interactive CHI
Recognizing a need to develop the knowledge base for interactive CHI, the department is supporting a variety of evaluation efforts. The Agency for Health Care Policy and Research has funded assessments of some of the leading research-based applications. Results are being shared through AHCPR's diverse research dissemination channels to further an appreciation of the impact of these applications for specific conditions and populations. The National Cancer Institute's Small Business Innovation Research (SBIR) grants have supported the initial R&D for interactive cancer prevention projects such as nutrition education programs. The HHS Office of the Assistant Secretary for Planning and Evaluation and the Office of Disease Prevention and Health Promotion are jointly sponsoring a Science Panel on Interactive Technology and Health (SciPICH). The panel includes leading academic researchers in both interactive health applications and instructional technology. The panel itself will not evaluate specific applications or technologies. Instead, it will identify evaluation metrics likely to have the greatest predictive power for judging effectiveness as well as those most relevant for public policy interests.
Future Plans. HHS will convene a meeting of agencies that sponsor evaluation activities to strengthen communication among them and identify gaps and common interests. Agencies should be encouraged to implement R & D and evaluation projects to help clarify the need for and use of consumer health information of all kinds. HHS will assess the value and feasibility of creating an online inventory of evaluation projects to facilitate coordination. The 1997 Partnerships conference will include one track emphasizing evaluation. Building on the work of the HHS Science Panel on Interactive Technology and Health, mentioned above, agencies could develop a research agenda, solicit research, demonstration, and evaluation proposals, encourage new SBIR projects, and undertake selective model projects in partnership with the private sector. This R & D effort could be undertaken at a range of resource levels.
Special Populations
For populations with special language or literacy needs, HHS is currently making available online existing publications targeted toward these groups. But it will be important to ensure access to more traditional sources and types of information by those without computers and those with special needs.
Future Plans. Because many of our vulnerable populations still rely on the telephone to obtain health information, we would like to expand our capacity to respond to their calls. The toll-free number of the HHS National Health Information Center will be enhanced through automated response mechanisms, but it will be unable to meet demand for personal service. Other toll-free numbers are also improving their automated response capacity through innovative technology. At the same time, HHS would like to be able to support technical assistance and training to diverse community intermediaries that serve these populations, such as libraries, voluntary organizations, and Historically Black Colleges and Universities. In the absence of new funds for such activities, HHS will encourage agencies to add technology training components to existing community-based grants where appropriate.
Conclusion
The vision of a ubiquitous network linking individuals to health information that is vital for themselves and their families may become a nightmare of tangled links and overwhelming content as new CHI providers (public and private) rush onto the Internet. The Federal interest is to preserve both the diversity and quality of information while enhancing the likelihood that users can actually find what they need, when they need it, and in a manner that suits them. And as always, the Federal government will retain a special interest in certain populations, such as the underserved, those at high risk for burdensome health problems, and those, like Medicare beneficiaries, toward whom it has specific obligations. In a time of reduced budgets, HHS will pursue these interests through enhanced coordination and targeted initiatives.
Attachments
Attachment A: Selected On-Going Federal CHI Activities
Attachment B: HHS Net '96 Showcase List
Attachment D: Gateway to Consumer Health Information
Agencies Represented on the Consumer
Health Information Subgroup
Health Information and Applications Workgroup
Committee on Applications and Technology
Information Infrastructure Task Force
Department of Health and Human Services
Office of Disease Prevention and Health Promotion
(co-chair)
Agency for Health Care Policy and Research
Centers for Disease Control and Prevention
Health Resources and Services Administration
National Library of Medicine
Office of Management and Budget (co-chair)
Department of Agriculture
Department of Commerce - National Telecommunications and Information Agency
InterAgency Committee to Develop
Enhanced Consumer Health Information Report
(Agencies not mentioned above)
Department of Health and Human Services
Administration on Aging
Food and Drug Administration
Health Care Financing Administration
Office for Civil Rights
Office of General Council
Office of Legislation
Office of Management and Budget
Office of Planning and Evaluation
Department of Defense
Department of Education
Social Security Administration
PARTNERSHIPS FOR NETWORKED CONSUMER HEALTH INFORMATION
Organizing Committee
U.S. Department of Health and Human Services
* Office of Disease Prevention and Health Promotion -
convener
* Agency for Health Care Policy and Research
* Centers for Disease Control and Prevention
Health Care Financing Administration
National Library of Medicine - National Institutes of
Health
Office of the Assistant Secretary for Planning and
Evaluation
U.S. Department of Agriculture - Extension Service
U.S. Department of Commerce - National Telecommunications and Information Agency
U.S. Department of Defense - Office of the Assistant Secretary for Health Affairs
Alliance for Public Technology
* Annenberg Center at Eisenhower
Annenberg Washington Program
Association of State and Territorial Directors of Public Health Education
* C. Everett Koop Foundation, Inc.
Friends of the National Library of Medicine
Public Library Association
SPRY Foundation
San Diego State University
University of California - Berkeley
University of North Carolina - Chapel Hill
Access Media
Health Information Resources and Services, Inc.
National Pharmaceutical Council
International Business Machines
* = Contributing sponsor
References
- Consumer Health Information White Paper. Draft, September 1995. The lead author on this paper was Dr. Kevin Patrick, of the Office of Disease Prevention and Health Promotion. (Full text)
- "Consumer Health Education," in Managed Care and the NII , draft HIAWG white paper prepared by a public-private team led by Catherine Crawford of ASPE. (Chapter on Consumer Health Education)
- "Health Care and the NII," by Michael Fitzmaurice, Agency for Health Care Policy and Research, in Committee on Applications and Technology, Putting the Information Infrastructure to Work: a Report of the Information Infrastructure Task Force Committee on Applications and Technology. Department of Commerce, 1994. (Chapter on Health Care and the NII)
- Lasker, R.D., Humphreys, B.L., and Braithwaite, W.R., Making a Powerful Connection: The Health of the Public and the National Information Infrastructure. Report of the U.S. Public Health Service, Public Health Data Policy coordinating Committee. July 1995.
