Who Should Control Health Records?
It seems inevitable to me that sooner or later we're going to have some form of standardized electronic health records (EHRs) in this country. However, it is by no means clear at this point what such a system will ultimately look like. There's still a lot of work to be done with regard to creating documentation standards, ensuring interchangeability, agreeing on a common nomenclature, etc. In light of that, I find it remarkable that so much time and money is being spent on EHR and personal health record (PHR) systems without any guarantee that any of them will be compatible with whatever standards are ultimately agreed upon. It reminds me very much of the VHS/Betamax wars of years gone by (yes, I know, I'm dating myself!), as well as the more recent HD-DVD/Blu-Ray battle, except that there's a lot more at stake here than the cost of a piece of consumer electronic equipment and some videos. I can't shake the feeling that just from a technological/logistical point of view, we've put the cart before the horse. I'm anything but a fan of more government control (more on that later in this post), but I'm not sure that using the same approach we've taken to determine which home video format will prevail is the best way to establish national standards for health care documentation!
Be that as it may, there's an even more fundamental issue that has yet to be resolved, one that's even more important in my mind than the yet-to-be-determined technical and logistical components of EHRs. The most pressing question that has yet to be addressed is, quite simply, who's going to control access to American citizens' health care information? Creating standards and working out the kinks in the technology that will enable medical data to be easily shared is all well and good, but we also must arrive at a consensus as to who ultimately controls the flow of that data.
There are a number of scenarios being discussed at this point, but I find it interesting that the notion of one gigantic, centralized database containing the medical records of all Americans seems to be the one EHR option that many folks are the least comfortable with. What is it about that concept that gives us pause? Certainly there are logistical barriers to such a system, but by the same token it would probably be much easier to create, maintain, and access one centralized EHR system than it would be to link up multiple regional medical data repositories, as is the current approach. No, I believe our resistance to centralized EHRs is less about technology or logistics and more about our fear of that much information (and the corresponding power over our lives) potentially falling into the hands of entities who may not have our best interests at heart.
And THAT, in my mind, is the crux of the matter: who DO we trust with the most intimate medical details about ourselves? Or perhaps more importantly, who SHOULD we trust? Is there anybody out there who is as concerned about our privacy as we are? Do the benefits of centralized control of health care information outweigh the potential risks to privacy?
I can only speak for myself when I say that less is more when it comes to government interference/intervention/control over my life. I'm vehemently opposed to any EHR program that would give government unlimited access to the medical records of millions of U.S. citizens. But neither do I have much more confidence that other parties such as insurance companies, lawyers, technology vendors, or even health care personnel would be as careful with my medical records as I would want them to be.
So where does that leave me?
My vote is for a consumer-controlled approach to electronic health records using PHRs as the primary mechanism for storing and sharing information. Patients would keep their records on USB flash drives and use readily available PHR software to keep the information updated. For patients who don't have their own computer or don't want to maintain their own PHR, assisted PHR services (operated by MTs, naturally!) could provide this service at a reasonable cost. Health care providers would be able to plug the flash drive into a PC and view and download the information from the flash drive, as well as upload information to the flash drive. The patient controls the flow of information, and the health care provider has access to correct information. The technology to facilitate the capture and storage of medical data--PHR software, USB flash drives, etc.--is cheap, readily available, and relatively easy to use. Certainly we would still need to create standards for document formats, nomenclature, and data exchange, but I believe that process is well on its way already. By using open-source software and already accepted file formats (OpenOffice, anyone?), I believe a user-friendly yet robust medical data sharing system--controlled by patients--could be instituted in a relatively short period of time at a very reasonable cost to patients and health care providers.
Of course, my idea is way too simple, makes too much sense, and doesn't offer nearly enough potential for megaprofits, so naturally it has no chance whatsoever of being implemented!