Autonomy and guardianship of our own clinical information.
In 1999 I had an inspiring conversation with one of my more brilliant colleagues, Dr. David Margulies. David was floating the idea of creating a commercial ecosystem whereby there was just in time bidding over the Internet for different service package for patient care. The nature of such packages would range from such well-established services as home visiting nurses but would extend to the cost of supplies for surgical procedures to entire disease management package for instance, lifetime diabetes care. In doing so David presciently was combining what would become in 3-5 years known as Web 2.0 technologies and some free market principles to argue that such an open market would create such efficiencies that would both lower health care costs and encourage standardization and improved quality of the products of health care delivery. Although the company founded around this idea, SmartAgents (with which I never had any relationship), was eventually acquired by a larger company, it is not clear to me that any of these ideas ever came to their full fruitition. From this admittedly biased perspective, it is because yet again the buyers of the product, the recipients of the product and the payers of the product were, as they have been for a long time in health care, been poorly aligned. Market efficiencies will make the most sense when patients will have transparent access to the relative costs and qualities of packages afforded to them at the time they purchase entire health care packages such as insurance so that an efficient market will have appropriate feedback mechanism in terms of the consumer of that product. However, with all the complicated details required of such a system, the sine qua non precondition will be portable transparent access to patient information under patient control so that for a given state of disclosure, a vendor of a particular health care good can efficiently and accurately bid to provide that care. Let’s be clear we are not asking patients literally out the door with their leg in a cast to put out on a medical “eBay” request for bids for their after surgical care. In directly identifying the patient and their patient controlled record as the conduit for decision-making on who has access to their information and who gets to bid on which services to their healthcare professionals (or other decision makers) we are putting the real payors in charge. And we, the patients can decided whether the payment system we adopt is one of full payment, partial payment and so on. We can decide to bid for services through collectives such as patient advocacy groups, employers or even hospitals but the decision is ours. This may seem a little too coolly rational and heartless (or naively optimistic about individual autonomy) but let’s contrast that to the current system where the patient is not a party at all to the bidding for healthcare products, they have no knowledge of whether the best such package was selected for them or the cheapest package. They have furthermore no idea to what extent they are in a long term, short term or committed relationship with these vendors or products. By revisiting the maxim “she who controls information exerts control” through the use of personally controlled records we are re-asserting or perhaps asserting for the very first time the patient’s fundamental control of the market around their services. Again, this does not mitigate the need for collective bargaining for healthcare services, nor does it remove expert decision makers from decisions regarding, which packages of health care are in the best interest of the patients. It does however provide transparency to the patient and a rational basis for them to decide whether they are getting, in their opinion, value for their money or whether should they seek such value elsewhere. This is no more (unfortunately) and no less than the cellular phone companies provide us all when they attempt to woo us to adopting one of their service plans. The much larger stakes of health care makes such transparency more, not less necessary. Given my recent experiences with my cell phone (and my mother's health insurance invoices), I do hope we end up with more transparency.