What I’m about to share is a personal point of view. I’m not a big believer in health information exchanges (HIE).
I’m certainly a fan of what HIEs promise to do; improve care safety and quality by making sure that personal health information is available anytime, anywhere it is needed. It wouldn’t matter if a patient shows up in Seattle or Spokane, their health information (medical record) would be available to the doctors, nurses or others who might care for them. In a perfect system, the same would be true if the patient showed up in Peoria or New York City or even Timbuktu. And yes, I know that thanks to foundation grants and government funding, a few local or regional health information exchanges are up and running today. But I also know that a sustainable business model for these exchanges is far from clear. In addition, the patient in these solutions is pretty much out of the loop. Furthermore, I know that most competing hospitals, clinics, physician offices, and other entities in our healthcare system aren’t especially thrilled over the idea of freely exchanging data with one another. And as far as I can tell, no nation large or small around the world has yet really pulled off a comprehensive, national (let alone worldwide) health information exchange no matter how much money has been spent trying to do so.
For all of those reasons and more, I have been advocating what I believe is a much more logical, affordable, and technologically feasible model – aggregating personal health data around the patient, and allowing the patient to share his or her data with whomever needs to see it, be that a clinician, family member, loved one or other person. This would accomplish pretty much the same thing as an HIE without all the fuss over who owns the data (the patient just gets a copy of their own data) or how much data must be shared between competing organizations or entities.
But how much would it cost to store all that data, and who would pay? Well, if you believe the calculations put forward today in a blog post by luminary physician and CIO, Dr. John Halamka, we could store all that information in the cloud for less than 50 cents per person per year. I won’t repeat the complex calculations Dr. Halamka used to reach that conclusion (for that go here), but the math looks pretty sound to me. So why not develop a cloud-based repository for personal health information and put the patient at the center and in control over his or her account? The patient could decide the data bank he or she trusted most. That might be their insurer, a commercial service, or even a state or government organization. So long as any organization responsible for storing patient data would agree to transfer that data to another such organization upon the patient’s request, there could be and probably should be several organizations in the business of storing data on behalf of patients. When visiting a hospital or clinic, the patient would simply provide access to their data bank and at the conclusion of the visit, request that a copy of the data from their most recent encounter go back into their bank. There could be contingencies of course for patients who show up unconscious or unable to grant access to their personal data bank - a kind of “break the glass” in case of fire scenario. And even if the patient had no interest what-so-ever in looking at their data, adding to it, or maintaining a “personal health record”, their healthcare provider could still set up such an account for the patient an deposit information into it.
Would this not get us closer to the always available, truly transportable electronic health record for most citizens that was promised so many years ago by President George W. Bush? Is there not a business model that could be sustained by patients themselves, employers, insurers, or a government agency at 50 cents per person per year to maintain such a system once it is built? If something like Microsoft HealthVault, and perhaps a few other solutions, became available to store and exchange our personal health information on our behalf, and most people selected one of these repositories, would it not largely obviate the need for health information exchanges?
Everyone wonders why everything that touches healthcare becomes so darned expensive. I think we over-regulate, over-legislate, and over-architect solutions in health. We make solutions way more complex than they really need to be. I’d rather see scarce healthcare dollars go to actually providing care for people, than for building multi-million dollar health information exchanges that leave patients out of the loop, and likely aren’t sustainable anyway.
Bill Crounse, MD Senior Director, Worldwide Health Microsoft