The National Health Information Infrastructure
Political, Economic and Social Barriers to the Realization of the NHII
Joyce A. Mitchell, Ph.D.
Associate Dean for Technology, School of Medicine
Chief Information Officer, Health Sciences Center
Professor, Department of Health Management and Informatics
One Hospital Drive
Columbia, Missouri 65212
Invited presentation at a public hearing, held at the O’Hare Westin Hotel, July 10, 2000. The Public Hearing was sponsored by the U.S. Department of Health and Human Services’ official advisory panel, the National Committee on Vital and Health Statistics.
Overall remarks on the NHII report:
The report overall is very well done. The key concepts in the NHII report are well formulated. I commend the committee members for good thinking, clear writing, and for developing an excellent process to get feedback. In fact, there is no part of this report with which I would take issue, other than the caution that it will take many years to have a fully formulated and functioning NHII across the entire United States and the entire health care system.
One specific statement of the NHII resonates with my own vision of the future: “The NHII is not an effort to collect personal health data from individuals or health care providers. Nor is it the creation of a centralized government database to store personal information about individuals. The NHII offers a way to connect distributed health data in the framework of a secure network. Comprehensive federal and state health information privacy legislation will ensure that the network will have strict, built-in confidentiality protections for personal health information and tools that individuals can use to protect their information and privacy.”
Building on this excellent vision, the goals are “stretch goals” but doable over the long run. This means that each part of the health care system will have to rework a major part of their daily processes and business in order to fully participate in attaining the vision, but it is attainable for those institutions and sectors who put their collective minds to the task. Most barriers are political, social and economic and not technical. But technical is sometimes difficult to divorce from social or economic. For example, the future is envisioned where all individuals living in the US will have access to a computer connected to the Internet. While this is a laudable futuristic vision, it is a combination of technical issues along with economic and social that makes this a challenge to reach the 100% connectivity point.
I appreciated the viewpoints from the three dimensions: personal health, health care provider, community health dimension. But there are perhaps other dimensions that need to be thought through in order to see the full set of dimensions of this vision and its benefits. I suggest that there be a dimension of a health care payor (both the insurance community and the government agencies such as HCFA) since much of the behavior of the health care provider institutions is in response to the payor requirements, and a dimension from the clinical research community that is being transformed by the human genome project and the promise of genotype-phenotype matched designer health care. In the next decade, and the next century, this work will transform health care, but also represents a convergence of the power of computing with the enormous databases of biological diversity and individual variation.
The section on what stands between the present and the desired future is excellent. The list of legal, societal, organizational and cultural barriers on pages 4 and 5 is well formulated and, if anything, understated. Technical barriers are listed here, but it is certainly the case that most barriers are not technical, as long as the capital investment is made in the technical infrastructure, including attention to security systems. The conclusion after reading this list of barriers is that, the NHII can be achieved “simply” by changing the culture and behavior of the entire health care system!
For most large businesses, including health care businesses, the organizational issues relating to changes in the way that business is conducted are numerous and the resistance to change is very real. These are internal politics and these are usually the largest barriers. Most academic health care organizations and integrated delivery networks are facing challenges to their cherished way of life, not unlike the pressures faced by other industry sectors that had become dinosaurs of antiquated processes and thinking. With financial pressures mounting, reimbursements falling, and patients becoming more assertive, there are enormous pressures to rethink fundamental processes and to streamline them using information systems. The University of Missouri Health System, like most academic health centers, is rethinking processes related to the revenue cycle (including registration, scheduling, coding and abstracting, billing) and the clinical process (access to patient information, placing orders, receiving alerts and reminders, using protocols and guidelines, and tracking clinical outcomes), including considerations of patients interacting directly with systems and full use of secure internet connectivity. It is a lot of work but relatively easy to build the information systems to fit the system once a decision is made about how to redesign the work. It is extremely difficult to change the very nature of the clinical process so that the provider-patient interaction is different from what was taught in school and practiced forever. And it is usually not that the physician or other staff does not wish to consider alternatives. The problem is usually that the pace of healthcare and the administrative paperwork associated with healthcare has sucked up all of the available time so that the provider is not able to participate fully in these discussions. Further, institutions need strong internal leadership to make the changes necessary to transform their institution to fully participate in the information rich environment that is part of the vision of the NHII. The challenge “When you are up to your waist in alligators, it is difficult to remember that you came here to drain the swamp” is an apt adage in the day-to-day life of health care and crisis management.
One of the largest NHII political barriers is the slowness with which the HIPAA regulations have been promulgated. It is difficult to get institutional leadership to commit scarce capital and to take standards, privacy, and security seriously when promised federal rules take years to emerge and every published deadline is missed. This is directly under the control of the Secretary of HHS and should be expedited, not only for credibility but also to speed up the process of the NHII and administrative simplification. I was heartened that President Clinton signed a national digital signature law in June. This needs to be used for leverage to publish the HIPAA security regulations, as a start.
The privacy concerns create large political and operational barriers that need to be tackled by federal legislation. The concerns of individuals about privacy violations are real in the electronic world, but are often times used as an excuse for not sharing information both internally and among institutions. The Secretary of HHS’s office can directly assist with this process by aggressively pursuing the publishing of the HIPAA rules for privacy and working with the other executive branch offices to follow up on privacy violations.
The politics of urban vs rural America is an issue with the realization of the NHII. Missouri is a state where there are large urban centers on the East (St. Louis) and the West (Kansas City) and rural counties in between. Getting needed health care services to undeserved and socio-economically deprived parts of our state is a formidable task, let alone getting the political support for paying for these services. We have years of experience with telemedicine and rural clinics where we can’t find the telecommunications infrastructure to connect remote clinics or, if we do, the costs are exorbitant. The Universal Services Act of 1996 assists with a favorable rate structure for remote locations, but it does not encourage the development of new infrastructure and so there remain inaccessible portions of our state. The HCFA restriction on billing for telemedicine visits is a direct hindrance from providing care for remote patients. This is just one example of the payor rules influencing (inhibiting in this case) the provider community from moving toward NHII. A scenario from the payor dimension would assist with the overall vision of the NHII.
Three major social issues include:
- The development and use of standards by the health care industry is urgent, including all of those issues and barriers on pages 4 and 5 of the NHII report. Leadership from the major government health agencies in the HHS is vital to overcome these barriers. And HHS must more fully engage the healthcare software and hardware vendors in all levels of the discussion so they are given a voice and see the benefits to their business.
- The healthcare industry must recognize healthcare consumerism as a major force shaping health care in our future. The Internet and the availability of healthcare information, disease specific chat groups, etc are leading towards a consumer revolution that will change medicine. The paying customers will take their healthcare business to those providers who can demonstrate the best clinical outcomes, at the best price, give good customer service, and have an internet presence with electronic follow-up. This consumer revolution in healthcare is happening despite the general non-participation of many health care providers and payors. It needs to be embraced by all parts of the health care world and shaped according to the vision of the NHII. Otherwise, the consumer revolution could lead to duplication of resources and databases and fragmentation of data instead of an integrated and lifelong person centered environment that is useful to all parties as envisioned by the NHII report.
- The scientific momentum of the human genome project to focus on health care improvements is a social force that is unprecedented in human history. The pressures to use genomic information to design treatments specific to diseases, individuals or families will cause social changes very broadly. This may cause longevity to increase dramatically and may alleviate much pain and suffering, but is unlikely to cause the overall spending on health care to decrease. The pressure to use clinical information for research will increase, and the need to link clinical and genomic information to study genotypic and phenotypic correlations will explode. It is likely that the genomic information on individuals will become part of the medical record, either in part or as a whole. [One specific suggestion for the report would be to mention genome data as part of the core content of the patient record.] The century ahead will likely be the century of biological and medical breakthroughs just as the last century was the century of physics and astronomy. This imminent revolution needs an additional dimension to be added to the scenarios of the NHII report: that of the scientific researcher who needs access to genetics databases and bioinformatics tools located around the world but also needs access to various types of patient and human population data.
Third, to address the economic barriers. This is going to cost a lot of money. This must be, as the report indicates, a public-private partnership. And it will be partially consumer driven. But it is coming at a time when health care institutions are reeling from the effects of indigent care, managed care, Balanced Budget Act repercussions, rising administrative regulations, and the impression that the payor community is just looking for reasons to deny payment of claims. The national economy is growing strongly; the international economy is picking up nicely, but the U.S. health care industry is in a recession that only promises to get worse before it gets better. The health care industry must do what other industries have done as relates to prioritization, streamlining, and reinvention, but it will remain a difficult time to pony up the investments needed for transformation as is envisioned in the NHII report. My previous suggestions about software vendor involvement and DHHS leadership are vital in this regard. But there is need for investments in the basic infrastructure components of the NHII that are done federally and that make it easier for the health care industry to see the benefits of participating and, in fact, leading the country in the direction of the NHII report. There is also a need for grant funds for demonstration or pilot projects for specific parts of this vision.
The personal socio-economic dimension will remain a challenge to our society. I doubt all people will have an internet connected device in their home despite the consumer revolution alluded to earlier, but I hope all people have access through their schools, churches, libraries, health clinics, day-care, employer, etc. The challenge will be to fund these devices and encourage their use by all.
The major points to add to the NHII Report:
- Add a view of the NHII from the dimension of the researcher and another from the payor community. Or consider augmenting the three existing dimensions to include components of the genetic research viewpoint and also the payor community.
- Involve the healthcare software vendor community in the planning for NHII so they can participate in the benefits and the results. This might best be viewed from the Electronic Commerce movement so the vendors can see that there are multiple opportunities in these new markets.
- Consider government investments in the NHII that make it easier for the providers to see the benefits of participating in making the vision of the NHII into reality. Consider grant funds for demonstration projects for specific components of the vision.
- Publish the HIPAA regulations as quickly as possible and follow up with actions that show the government will enforce the regulations. Erase other federal barriers to telemedicine and remote healthcare. Use The Telecommunications Act of 1996 and it’s Universal Services Fund to encourage the telecommunications infrastructure to be expanded and reach the remote environments.
Joyce A. Mitchell is Associate Dean, School of Medicine, Chief Information Officer for the Health Sciences Center, and Professor in the Department of Health Management and Informatics at the University of Missouri, Columbia. Her current institutional role is to direct the strategic planning, implementation and operational work for information systems and electronic commerce at the University of Missouri HSC, including the Schools of Medicine, Nursing and Health Related Professions, and the University Health Systems (hospitals and clinics). Her scope covers the educational, research, patient care, and administrative domains. Dr. Mitchell, reporting to the Vice Chancellor for Health Affairs, leads Integrated Technology Services, approximately 250-information technology, biostatistics, and informatics professionals who carry out the above named mission.
Dr. Mitchell received her B.A. degree in mathematics summa cum laude from Stephens College, and her Ph.D. in population genetics from the University of Wisconsin, Madison. She spent two years as a postdoctoral fellow in Medical Information Sciences at the University of Missouri-Columbia and another two years as a postdoctoral fellow in clinical medical genetics at the University of California, San Francisco. She is a certified Ph.D. Medical Genetics by the American Board of Medical Genetics. She is a Fellow of the American College of Medical Informatics and a Founding Fellow of the American College of Medical Genetics.
Dr. Mitchell has been on the faculty of the University of Missouri Columbia for twenty years. She has been responsible for over $12 million in external grant funding. She has over 100 publications. She has served on multiple national committees, including those of the American Medical Informatics Association, the American College of Medical Informatics, the University Health System Consortium, the Council of Healthcare Information Management Executives, the American College of Medical Genetics, and the American Association of Medical Colleges. She has served for over 15 years on the Governor’s Advisory Committee on Genetics Diseases for the State of Missouri.