It is well known that major efforts are currently under way in the US, UK, and other countries to construct entirely new systems for the management of electronic medical records. The thesis of this article is that, in principle, it is possible to design these systems in such a manner that they serve not only as an information resource for routine patient care but simultaneously serve as the primary backbone for medical research at little or no additional expense. This article presents a conceptual framework for an electronic system in which every medical record would be immediately available for research, thereby providing critical feedback on the efficacy and cost of medical procedures. Furthermore, the proposed system is designed in such a way that medical data are made available without the need for complicated and expensive security precautions or the need to obtain permission from multiple parties to utilize the medical data. The time window to adapt such as system, however, is limited. Once the nationwide system has been constructed it will be impractical to retrospectively integrate this fundamental feature.
Defining the Problem
What single item cost US$1.5 trillion or 14.9% of the gross domestic product (GDP) of the US in 2002?1 For what service does every man, woman, and child pay over US$5,000 each year to receive?2 What has grown faster than the rate of inflation for over 30 years?3 What does the Congressional Budget Office estimate will cost the US government three times more in 2050 than it did in 2000, even when calculated as a percentage of an increasing GDP?4 The answer to each of these questions is healthcare.
The problem of escalating costs for medical care has been recognized for years. However, despite several large-scale efforts to address the problem, including the Clinton administrationÔÇÖs historic initiative in the mid 1990s, medical care costs continue to grow unabated. Exacerbating this issue is a population demographic for which the number of elderly people in the US is expected to double between 2000 and 2030.5 While many aspects of this issue may be debated, it is a mathematical certainty that current rates of growth in healthcare spending cannot and will not be sustained. Arresting the rate of growth in healthcare costs can be achieved in one of two ways:
- reduction in the quality and/or quantity of healthcare; or
- improvements in efficiency.
- Centers for Medicare and Medicaid Services, Office of the Actuary, National Health Statistics Group; and US Department of Commerce, Bureau of Economic Analysis and Bureau of the Census, http://www.cms.hhs.gov/statistics/nhe/projections- 2003/t1.asp
- Centers for Medicare and Medicaid Services, Office of the Actuary, National Health Statistics Group; and US Department of Commerce, Bureau of Economic Analysis and Bureau of the Census. http://www.cms.hhs.gov/statistics/nhe/projections- 2003/t3.asp
- Centers for Medicare and Medicaid Services, Office of the Actuary; Bureau of Labor Statistics (CPI-U, U.S. city average, annual figures).
- A 125-Year Picture of the Federal Government's Share of the Economy, 1950 to 2075, A summary from the Congressional Budget Office. No. 1 June 14, 2002; revised July 3, 2002.
- Congressional Budget Office based on Bureau of the Census, US Interim Projections by Age, Sex, Race, and Hispanic Origin, Table 2a, Projected Population of the United States, by Age and Sex: 2000 to 2050 (March 2004).
- Transforming Health Care: The President's Health Information Technology Plan, http://www.whitehouse.gov/ infocus/technology/economic_policy200404/chap3.html
- Research Repositories, Databases, and the HIPAA Privacy Rule, US Department of Health and Human Services, National Institutes of Health, http://privacyruleandresearch.nih.gov/research_repositories.asp
- Nineteen Eighty-Four, by George Orwell, 1949.
- New Drug Application Process, US Food and Drug Administration, Center for Drug Evaluation and Research, http://www.fda.gov/cder/regulatory/applications/nda.htm
- The Freedom of Information Act, United States Code, Section 552.