The Department of Health and Human Services (HHS) has given notice in the Federal Register that it would like to receive comments on, among other things, a recommendation by the American Health Information Community (AHIC), a chartered federal advisory committee, to advance the development of electronic health records (EHR).
The recommendations suggest a nationwide approach to developing digital and interoperable health IT systems. (“Request for Information (RFI): 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 (Nov. 1, 2006). Comment period closes Jan. 2, 2007.)
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 his or her own personal database. A patient’s memory stick could be plugged into any doctor’s or hospital’s computer, making the 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 his or her own control, allowing the person 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 why hospitals, as a customer service, couldn’t provide such data downloads as part of their services. Physicians and hospitals already photocopy records for patients, so why not simply provide digital downloading of such records instead?
Digital records are easily updated and 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 a person’s personal medical data and how to protect it would rest with the patient.
Such a solution would be simple, 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.