National Committee on Vital and Health Statistics
Workgroup on National Health Information Infrastructure
Workgroup on Health Statistics for the 21st Century
October 30, 2000
President & CEO
National Health Foundation
Thank you for this opportunity to share the challenges and experiences of an organization that is first and foremost a user of health statistics and data. The National Health Foundation (NHF) is a charitable organization with a 27 year history of attempting to improve the effectiveness and efficiency of health care and most recently the health of populations with limited access to care or access to health information.
NHF’s mission has been carried out through projects such as outreach to low-income pregnant women that connects them to free or affordable early prenatal care. We have been involved in numerous health education projects designed with sensitivity and attention to diverse cultural and language requirements. We have been battered and bruised in attempts to create community health information networks and greater sharing of non-identifiable health data among all stakeholders. NHF was involved in outreach to uninsured families to build linkages to public and private health coverage options for uninsured children – before the federal CHIP program was developed- and we continue to be very involved in that work. Our major focus in the last several years has been creation of web accessible tools to enhance health-related decision-making for organization like ourselves that work with uninsured and underserved populations.
I will share several of the challenges we have faced and lessons we are learning in our efforts. I will also attempt to relate our experiences in the field to the vision and policy directives that the NCVHS Workgroups are developing. Most of what the Workgroups have proposed has been inspirational and has affirmed the direction and purpose with which NHF has naively approached many of the difficult data sharing and health information technology projects in which we have been involved since 1992. I could spend my allotted time referencing sections of the proposals, which are totally consistent with NHF’s field experience and research. However, what I believe would be more useful is to highlight several examples of our attempts to implement the public/private collaborations that are proposed throughout the reports and also those areas where we have disagreement with the proposals.
We would generally evaluate the Workgroups’ efforts as under estimating and understating the importance and difficulty of creating the degree of public/private collaboration that is essential to realizing the goals of the National Health Information Infrastructure and the process for creating a Vision for 21st Century Health Statistics. NHF has spent eight years and approximately $3 M in attempts to utilize information technology tools more effectively to enhance health. From our attempts in the early 1990s to create a health information network for all California providers, health plans and employers, we learned that the challenges were not about the availability of technology but rather about who would benefit and who would pay. The Workgroup proposals have done an excellent job of outlining who benefits but have left unanswered the question of who pays. For the Workgroups’ proposals to have impact and serve as policy frameworks, much more needs to be said concerning which entities will have primary responsibility for providing resources. How costs can be fairly distributed could be the most important aspect of the reports and having a full and rich discussion around the resource issues might provide the breakthrough that we all hope will occur in the next several years.
The term public/private partnership is often substituted when a viable business model is not available and who picks up the bill is uncertain. Because NHF had to raise funds from private philanthropic sources, gain the support of public entities and rely on in-kind contributions of commercial technology products and services, we have been forced to develop business models for our pilot projects that deal directly with resourcing issues. Some of these business models have survived and others haven’t. A model that has often been proposed but rarely works is one NHF has attempted several times. It involves bringing all the organizations that would benefit from a common administrative data transfer system together, designing an ideal system and then looking around the table of providers, health plans, employers and government entities that often represent some aspect of the other three and determining that one class of participants has greater resources and should capitalize the effort. From our experience in this situation, usually providers and employers and to some extent government have looked to health plans to finance these efforts. In 1993 and 1994, we made good progress with this model and health plans in California did contribute significant funds to create a shared electronic data interchange, however, when it came time to capitalize the necessary provider technology, the collaboration broke down because providers were unwilling to invest in systems or services that they perceived created greater value for their trading partners than for them. Subsequent efforts that have followed under the leadership of employers and health plans have had limited success because of the required level of investment required by providers and their unwillingness to finance the purchase of technologies and services that they believe have limited return.
When I recommend that the fair distribution of costs must be addressed in the Workgroups’ proposal, I am focusing on return on investment issues that need to be clearly presented and analyzed. There are references to the need to enhance the quality of health services and to turn the tide on the prevalence of medical errors, which the Institute of Medicine sites as the fifth leading cause of death in this country. As consumers, we will all benefit from greater investment in health information systems that can detect potential errors related to drug interaction and insure diagnostic accuracy. Should that mean those purchasing health benefits should be willing to help finance investments in improved information systems and decision support? For most Americans, the purchaser of benefits or care is not the consumer but rather the employer or the government. This situation makes the return on investment much more difficult to calculate because it is indirect in most cases. I would propose we find new ways to calculate return on investment that takes into account enhanced quality of health care and improved health status. This type of calculation would have broad impact and use metrics related to community health status. The model I propose would have returns distributed to all the various stakeholders and those such as the uninsured and underserved that could not support an investment would be the responsibility of government and philanthropy. Health plans, employers, providers or products and services companies (including pharmaceutical companies) would all be given a distributed portion of the investment and return.
We believe the issues related to return on investments in health information technology will become more high profile and more contentious in the next months and years as the Health Insurance Portability and Accountability Act (HIPAA) of 1996 is implemented. I’m the consumer representative on the WEDI Board of Directors and this legislation specified official comment was to be provided by the WEDI organization. After months of deliberating the regulations that have just been published, WEDI has found itself in the middle of an even bigger debate concerning return on investments related to HIPAA. The same questions regarding who will benefit and who will pay are surfacing and the debate may lead health plans and providers to work very hard at delaying or even blocking the implementation of HIPAA. If this were to occur, we would see it as a major setback for consumers and progress toward the National Health Information Infrastructure. I urge you to get involved in this specific issue and determine how the consumer view can be represented in this coming debate.
In mentioning HIPAA, I must also mention a provision of that legislation that still is awaiting the issuance of regulations because Congress failed to act on the privacy and confidentiality of personal health information provisions. In order for HIPAA to contribute significantly to the vision of the National Health Information Infrastructure, we need a vigorous public debate on these issues related to privacy. Had Congress acted in the timeframe that was specified, that debate could have occurred over the last several years. We believe that debate is just now beginning as the public begins to understand the risks and rewards associated with having personal health information available in formats that can be electronically transferred and shared. Too often the information that is being published by the media is related to the risk side of the equation. The horror stories that result when confidentiality of personal health information is breached make for lively 60 Minutes-type exposés but much of a real threat are such breaches present and how much benefit is derived when no breach occurs? How many lives can be saved each year if caregivers have access to more complete medical histories and more comprehensive records of tests and prescriptions?
NHF believes that balanced public debate regarding the risks and rewards of exchanging personal health information in a commonly understood manner among trusted entities need much more visibility. That is why we have been collaborating with consumer groups, practitioners, educators, payers, policy makers and philanthropies in the Vvaleo Initiative. This multi-year effort has been undertaken to provide all individuals and communities access to information, services and resources necessary to achieve optimal health and those involved are passionately committed to creating an epidemic of health that can spread rapidly to every part of this country and beyond. A key activity of Vvaleo is defining the means for individuals, families, communities and the people who serve them to be able to exchange health information in a commonly understood manner, trusted by all. This is an extremely ambitious effort but with the continued support and involvement of organizations such as the Veterans Administration, Department of Defense, academic medical centers, providers, private foundations and consumers from all circumstances, Vvaleo hopes to lead many conversations regarding the risks and rewards of sharing personal health information. We would invite your involvement and participation in this effort as it relates to the furtherance of the National Health Information Infrastructure. A key challenge is finding ways to resolve the critical issues among competing health information priorities particularly in situations where privacy of personal health information must be balanced against public health objectives. These issues have been framed in very straightforward language by Etzioni in his recent book, “Limits of Privacy” which I would recommend as required reading for all of us interested in finding balance among these competing objectives.
I’d like to close by sharing with you some examples of the work of the National Health Foundation and our partner organizations in creating the types of public/private collaboration that are referenced throughout the Workgroup’s proposals. NHF has recent experience in developing web-based health planning and decision support tools designed to integrate applications for individuals, health care providers and community health professionals. The tools are being developed at a common site that has been branded as HealthQueryâ. This is a collaborative effort undertaken to integrate commercial software and public and private data bases to create public-domain applications. NHF’s partners include the California Department of Health Services Center for Health Statistics, which is a large public entity. The State Center is contributing software, data and expertise to the effort. ESRI, a commercial organization that is the world’s leading supplier of geographic information systems (GIS) software, is contributing soft ware and also system integration services.
Other commercial contributors include Sun Microsystems and Oracle which have provided hardware and software products for HealthQuery. The development funds that support NHF’s coordination and project management have been provided by the Good Hope Medical Foundation, a Los Angeles–based private foundation. The rationale that was used to solicit philanthropic support for the effort was the need to develop tools that would address health planning disparities. Health Query addresses these disparities by creating access to free decision support tools that would not have been developed by commercial entities because the market for these tools is small and fragmented and they require geographic customization. The commercial contributors to HealthQuery are involved as a means of addressing the needs of organizations that serve the uninsured and underserved populations on the “have not” side of the digital divide. The State of California is involved because of its clear focus on making data available and useful to as many end-users as possible and in a format that is easy to understand.
HealthQuery is currently being developed and piloted in Los Angeles with a very large end user group that includes over 250 public health officials, health planners, community-based organizations, community clinics, provider organizations and academic researchers. HealthQuery has a close alignment with the categories of users identified in the WorkGroups’ proposals. HealthQuery also has as a key feature the availability of data and analysis at the geographic unit that end-users told us was most useful. You will not be surprised that the geographic unit of choice of community-based organizations is ZIP code.
HealthQuery has also tried to address the need for breakdowns of data by racial/ethnic subpopulations. This is challenging at the ZIP code level, but we have combined public and private data sources and are providing estimates for population breakdowns and growth at those levels for subpopulations. The work is guided by a firm commitment to protecting the confidentiality of data and small cell size rules are enforced. The essence of HealthQuery is captured in the statement on page 19 of the Vision for 21st Century Health Statistics. “If health statistics are to play their role in improving the population’s health, the users of health statistics data cannot be confined to epidemiologists, statisticians and other public health professionals.” The State of California Department of Health Services Center for Health Statistics has boldly endorsed this approach through their participation in the HealthQuery effort. NHF strongly believes that providing an experimental environment for public entities can be a key component of supporting innovation. Through years of working to build relationships of trust and mutual respect, NHF has learned that public/private partnerships cannot be casual references in proposals to funders or policy recommendations. Public/private partnering requires time and resources to develop. NHF has been a partner with the California Department of Health Services on numerous projects since 1992. Funds have seldom been earmarked for development of these collaborative efforts and it has been the good faith of everyone involved that has made them possible. The indirect links to commercial support that NHF has been able to broker has also been helpful but building the relationships with commercial partners also requires time and other resources. It is particularly helpful to have a high level of business savvy in order to understand what introductions and opportunities for visibility will be helpful to commercial partners.
The challenge of creating working partnerships is the primary issue I wanted to raise, but there are other aspects of the HealthQuery effort that may be helpful to illustrating how the concepts in the WorkGroup proposals are being applied. HealthQuery attempts to build the relationship between personal health information, clinical data and community health information. The tools have features such as “How Healthy Am I?”, “How Healthy is My Community?” and “How to find Health Facilities” which integrated with vital statistics query, predictive modeling and health resource location data bases. Many of the data sources allow for ZIP code level reporting and mapping and many use a combination of public and private data sources to create a blended data source, which allows data to be presented for current year. All sources are clearly identified and the “How to Use” section does warn users about referencing HealthQuery reports without citing the data sources. NHF knows that there will be many who criticize the sampling techniques of CACI, the private demographic data that has been used but we are ready to take the criticism. The key metric that guides our work is whether the tools are used for making practical decisions regarding where to focus health resources, conduct outreach to underserved populations and advocate for needed services. These are all needs that NHF has identified for programs we provide and those provided by other community-based organizations. To learn more about HealthQuery, I invite you to visit the development site at www.HealthQuery.org.
I will conclude by going back to the issue I mentioned as I began my remarks. The cost of change is significant and funding from public and private sources will be needed to implement the many excellent proposals of the WorkGroups in these early stages of re-engineering collection, transfer and use of health information and data. If the public and non-profit sectors are going to play a major role in this change process, more resources must be identified. Most partners in the commercial sector are not interested in funding the process because their orientation is toward providing solutions. Much more experimentation is needed before new commercially viable solutions can be marketed and the reports of both Workgroups are silent on where the innovation capital will be derived. Based on NHF’s efforts, I recommend that public and private sources of funding be made available and the role of philanthropic support in creating sustainable public/private partnerships be encouraged as a key to change and innovation.