Per Friday's post, last week I attended the Robert Wood Johnson Foundation's big event on health design in Washington, DC. The day-long conference was a forum for nine design teams to showcase new technology-based health tools they've developed over the last two years under a special grant program called Project HealthDesign.
Among those sitting on discussion panels at this event were the Senior User Experience Designer from Google, Senior Program Manager of Microsoft's HealthVault, and President and CEO of Dossia, a consortium of large employers working together to improve healthcare for employees across the county. No kidding. With this triad, the audience was expecting fireworks from the panel, as rivals Google and Microsoft were asked whether their companies were "at war" over dominating the market for online health tools.
But in fact all we got from the good-natured representatives at hand were sheepish grins and shoulder-shrugging nods over whether data from their respective health sites would one day be interoperable. Que sera sera?
In any case, I wanted to share three (more) significant takeaways from the event that helped me make sense of the whole "PHR/A" (personal health records/applications) discussion:
1) It's a lot like iTunes
Patti Brennan, Director of Project HealthDesign, says it's all about "fundamentally rethinking something of value and repacking it in a way that enhances its accessibility to people." Like what iTunes did for music:
"To me, PHRs are quite a bit like iTunes. There are musicians that make the music. There are record companies that distribute the music. There is iTunes that provides a different kind of platform for distribution. But in providing that platform, they actually have broken apart CDs so that users only have to take the pieces they want. You don't have to buy the entire album, just the songs you want. And iTunes offers other important services. They keep track of the music and movies you purchase. They recommend other songs you might like. So this idea of many players in a distributed market of health data suggests that there would be incentives, first of all, for creating various kinds of repositories and action tools, and they might vary quite a bit."
"So institutions...have an incentive to have good data management, because health data is a capital resource for the institution. But there are other reasons why a company such as Google might want to get into managing health data. Maybe it'll draw more people to their site, and they can refer other sources or other products to them." Right.
2) Privacy = patient control
The big issue of privacy with online health records/tools is about more than just locking down computer security to keep hackers out. It's about "patient control over data access at the level of the data element, not at the level of the data," Brennan says. Here's an example of what she means by that:
"Right now, if I give my physician permission to see my medical record, he sees the whole record. But I might want my gynecology records limited to only my women's health practitioner and no one else, because I don't think anyone else needs them... If I'm keeping really close track of my menstrual cycle and my sex life for a discussion with my clinician, I don't necessarily want that shared with my dentist. And so being able to assign permissions on the level of data elements is really important."
She adds: "This is pretty complicated, and it gets burdensome to patients. Yet, it is important and that is why we have spent so much time working on the common platform and its role in advancing patient-centered PHRs."
3) Size of your file: TBD
Have a look at this thoughtful post at the Project HealthDesign blog. Blogger Lygeia R. muses over a recent Washington Post article called Bytes of Life, which "explores the proliferation of new digital sites and services to help people record and analyze nearly every aspect of their bodies and behaviors." (She notes that "data junkies" can find links there to sites that let users track geographic location, Internet use, menstrual cycle, and yes, even your sex life.)
But how much information is useful, and how much is just too much?
Clearly, we're all still struggling to understand how much health data is necessary or sensible for certain health purposes. There's mention of how collecting data helps us to be objective and avoid the "halo effect" — unrealistically positive perceptions of our own behaviors. For example, the way keeping a food diary can be eye-opening about your real eating habits. A good short-term application, that.
Diabetes is certainly one of the health conditions that can benefit most from "personal data collection" over a longer period of time. But diabetes is pretty darn intense to manage anyway. And it never stops. So data collection can become a major albatross. How often and how long do we have to "log" to get anything out of it?
All of which makes me wonder, Dear Readers: How do you think some sort of digital health tool could help you most? I'm guessing that what makes sense to some people may be nonsense to others. I haven't quite figured out what my dream diabetes application would look like either, or at least nothing that seems to be the least bit realistic (just automate my glucose control, pleeeaaassse!)