The Markle Foundation has a health program that is dedicated to accelerating the rate at which information technology enables consumers and the health system that supports them to improve health and healthcare. That’s a mouthful. Well, anyway, they held a meeting in San Diego over the weekend that brought together a lot of the major healthcare players, including some “Health 2.0” companies, like Jamie Heywood from PatientsLikeMe.com.
David Kibbe has the story on the meeting:
The Markle conference was a conversation, a very spirited debate at times, on the answers to these questions in reference to this framework :
1) What is required to “liberate” personal health information and data in electronic format from the institutional custodians, the Health Data Sources in the framework above, that currently create, store, and manage health data, but do NOT currently release or share the data widely? What actions or incentives are required to enable Americans to get their hands on their own health data?
2) What rules should govern the organizations that acquire, store, and share personal health information over the Internet? Are there trade-offs between privacy protection and access? Is “privacy” used sometimes as an excuse for the institutions to cling to control over the data? How do we avoid bad policy and bad legislation in this important area?
Finally, a distinctive characteristic of this meeting was the consensus on certain relevant, important observations and goals. Everyone in the room agreed that patients are not very interested in PHRs, that is, in static collections of health information. Rather, consumers/patients want service and value based on the content of their own data. They’re not looking for technological experiences with their computers or websites. They’re looking for ways to save money, get better information about care providers, and have a better experience with the health care system. Consumers don’t want online banking: they want what online banking makes it easier, faster, or more enjoyable to do. Similarly, patients don’t want online medicine: they want what online medicine enables them to do with their health and wellness data, which in turn will improve health and wellness. This includes being able to converse with their doctors.
It seems difficult, if not impossible, to include everybody in the room that should be there, and of course the comments section noted three groups not represented at this meeting: CMS, EMR vendors, and actual payers. Since most of these 3 have significant weight to direct how changes are made to the healthcare system as a whole, it would’ve been nice to have them in the room. Or at least a few representatives.
I don’t know what to make of meetings and conferences like this. I think they are great opportunities to socialize, network, and meet others who are in a similar space as oneself. But I have almost never seen anything concrete come from such meetings, other than getting people to think about these issues more (and perhaps, for a few people in the room, think about things in slightly different ways). Especially when you have 200 lb. gorillas in the room like Google and Microsoft, who worry more about marketshare and increasing shareholder value, rather than a long-time or historical interest in improving healthcare.