Do Patients Need and Want Data, or Convenience Features?

So it seems that most patients were not “engaged” to, and certainly not “married on” independent PHRs such as Google. Many people including myself have learned more from failures than successes. Sometimes it helps to learn not just from my own failures but from the failures of others. So while the recent announcement of Google Health demise was no surprise, it offers an opportunity to learn. What do patients want? What do they need? Are needs and wants the same?

Mr HISTalk wrote about what Google Health should have done, and asked what actual users (not only HIT pundits) think. Missy Krasner, a founder of Google Health, echoes some of the same observations about people wanting convenience functionality, not a medical archive. She also asks the same question (“to tether or not to tether”) and comments on PHRs not being “social enough” – see my posts about Being Engaged to Multiple EHRs and Social Healthcare and Social HIT).

So, answering Mr. HISTalk’s call, here’s my experience. I was/am a user of both Google Health and Microsoft HealthVault, hoping that one or both would get over the hump of updating my record with providers’ data so I wouldn’t have to enter it myself. Technically, both of them were partially over that hump since they could import medications from my Pharmacy Benefits Manager (Medco), and Lab Results from my main lab provider (Quest), except that I had to get a physician authorization for the labs (why this barrier?), which was an example of the authentication hassle that Missy mentioned. Microsoft was more proactive than Google in allowing HealthVault PHR updated with discrete data extracted from a clinical summary (e.g., CCD) sent by an EHR via SMTP (email) protocol, which I’ve done successfully. While Google was nominally a member of Direct Project, Microsoft was much more involved and visible. Will HealthVault actually be updated by many EHRs, and even so will it still meet Google’s fate? I won’t speculate on that, except to say that Microsoft made it farther over the hump than Google did.

You Don’t Want Only Data, but You DO Need Data!

Nearly everyone intones that a PHR is not useful if it’s just a passive data “filing cabinet.” They say Google Health just didn’t “DO” enough to capture the minds and time of patients, although both HealthVault and Google Health had “ecosystems” of applications that would work with them. A few years ago, I thought “patient engagement” largely meant PHR (including their ecosystems) + patient portals. But I now realize that patient engagement goes way beyond PHR – I’ve got a large and growing list of what it encompasses. Still, just because functionality and convenience are what “sell,” that does not mean that data is unimportant! A physician or hospital won’t want to buy an EHR just for a raw database if the EHR lacks functionality and usability. But an EHR without a solid data foundation probably won’t be very functional or usable either!

Not all patient engagement is data-dependent. For example, I could schedule an appointment without having any of my electronic health information. In my next blog post, I’ll discuss which patient engagement functions clearly need EHR data, which ones don’t, and which ones are in a gray area.

Happy Independence Day!