Today was the Plenary Session of the HL7 Working Group Meeting. Every year in September, the first half day is spent mostly listening to folks from outside the organization present to us on interesting topics. This year, the topic of discussion was HL7 in the ERA of Patient Empowerment. To get the full impact, you really had to be in the room. You can find the Plenary materials here for now.
The first speaker was Leslie Kelly Hall. I got the meeting just a wee bit late, but thanks to Dave Shaver, I was able to catch up via Twitter. I put together a PDF of the twitter feed for #HL7WGM going through the entire plenary, which you can find at the end of this post. I only cover below materials up through the first half of the plenary.
Leslie's a great speaker, and you should definitely check out her slide deck (see the plenary materials link above) alongside Dave's tweets. What I took away from her presentation was the need for patients to be included in the circle of trusted data sources. HL7 is working on a Patient Authored Note that I hope will become a follow-on to the #ABBI project, and take advantage of the other side of the IHE Mobile Health Documents Profile.
After Leslie was Lee Rainie of the Pew Charitable Trust. I already knew of Pew's work through Susannah Fox (she's another excellent speaker you should listen to if you get an opportunity). I don't think I've ever heard a speaker pack as much information in as Lee does and keep it as interesting as he did. I'm a pretty fast typist, but Lee was going so fast, I just couldn't keep up with him. Thankfully there were about four or five of us tweeting in the room by then. My favorite comment from Lee is how he describes a common question Pew apparently gets: Are people stupider now then they used to be? No, he responds, there is just now more evidence of it now
In this, he's speaking to a topic that he gave another great quip: "Americans live their life such that the data exhaust that they are shedding is astonishing" Indeed.
After Lee was Elaine Blechman, whom I know well from her past role as HITSP Consumer Empowerment Committee Chair. That committee was the one that kept be up 36+ hours writing C32 in the first year of HITSP. Elaine's always been on the patient empowerment frontier. Her presentation focused on a paradox of dealing with homogenous standards to deal with heterogenous data.
Her key point was that Actionable Knowledge is the intersection between Patient Specific Data, and Evidence Based Medicine, and that maximizing actionable knowledge is to the benefit of the possessor of that knowledge. Her concern is that patients that most need actionable knowledge are also those that have the least access, by virtue of the fact that the knowledge is spread through diverse providers and payers. The key, she believes, it making that information available through the patient. While I agree in principle with her ideas, I think the messaging needs some work.
She also talks about "top-down" provider-focused standards, vs. "bottom-up" patient-focused standards. This echoes the current position of patients in the data chain, providers at the top, patient's at the bottom. I think they both need rich data, and that the real answer is in providing all of them access using #ABBI.
As I think about it, giving patient's access to their data through #ABBI will also enable patients to provide access to providers using the same set of standards. Here's my feed, they can say to their doctor, and through OAuth, select which data they want to make available to whom and when.