December 15, 2006
Government Medical Records Systems and Patient Privacy
by Sigrid Fry-Revere
Sigrid Fry-Revere is director of bioethics studies for the Cato Institute.
Comment on RFI on Improving Health and Accelerating Personalized Health Care Through Health Information Technology and Genomic Information in Population and Community Based Health Care Delivery Systems. 71 FR 64282 (Dec. 15, 2006).
There is no doubt that the sharing of healthcare information can be in a patient's best interest and contribute to the facility and accuracy with which the healthcare system cares for patients, nevertheless, healthcare information should remain as much as possible within a patient's own control. Healthcare institutions may wish to establish shared databases, but the government should not mandate or suggest that the Joint Commission on Accreditation of Healthcare Organizations or states mandate integrated data networks. The U.S. healthcare system is suffering from a serious trust crisis and mandating the collection of medical data may very well add to that crisis. Many people associate data collection with criminal data bases and fear the misuse of widely available data. The perception of possible misuse, regardless of how real or unreal that perception may be, is going to create mistrust and suspicion of everyone involved in the data collection process. In addition to the publicly perceived dangers of such a system, there is at least one just as efficient, but much less costly alternative.
Digital healthcare memory or data sticks could provide each patient with their own personal database. Such a memory stick could be plugged into any doctor's or hospital's computer, making each patient's medical records available everywhere in the world, not just within a national network of hospitals. This simple and relatively inexpensive solution would leave a person's medical records completely in their own control, allowing them to decide when, where, and to whom to disclose such personal information. At least one company, PinnacleCare, provides such data collection as part of its comprehensive range of patient support services. There is no reason, however, why hospitals, as a customer service, couldn't provide such data downloads as part of their services. Physicians and hospitals already photo copy records for patients, why not simply provide digital downloading of such records instead. Digital records are easily updated and easily transported. Patients, if they chose to do so, could wear their medical data stick on a lanyard, carry it in their wallet, leave it at home, or lock it in a safe. The choice of what to do with their own personal medical data and how to protect it would rest with the patient. Such a solution would be simpler, cheaper and make personal medical more readily available to a wider range of practitioners – all without risking further erosion of patient trust in the healthcare system.
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