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From PHRs to PHRSs

Personal health records (PHRs) are evolving toward becoming Personal Health Record Systems (PHRSs).

…that’s my key takeaway from attending the Robert Wood Johnson Foundation (RWJF) Project Health Design (PHD) conference in Washington D.C. on September 17. The conference was entitled  A ‘Report Out’ from Project HealthDesign and Forum on Next-Generation PHRs .

A PHD Fact Sheet capsulizes the evolution from PHRs to PHRSs:

…next generation PHRs should pair personal health information with powerful technology tools that interpret people’s health data and provide tailored feedback to support their daily health decisions.  PHD envisions the PHRs of tomorrow to be part of a broader personal health record system that supports people’s different levels of ability to care for themselves, health literacy, familial supports, technological fluency and other factors….The next generation of PHRs lies in their capacity to be coupled with alerts, reminders and other decision-support tools that help people take action to improve their health or manage their conditions.

“It’s not the record, it’s what you do with it”, summed up RWJF President and CEO Dr. Risa Lavizzo-Mourey.

The content of PHRs is expanding to include Observations of Daily Living (ODLs) — information about your diet, physical activity, pain, sleep patterns, adherence to medication, etc. The diagram below illustrates my sense of how both patients and clinicians tend to view PHRs today relative to Electronic Health Records (EHRs).  The basic idea here is that most people think of the PHR as a subset of their medical data — which is only the tip of the iceberg.

PHRtoday

The second diagram shows how PHRs are evolving.  Tomorrow the PHR will become a much broader concept than an EHR as more and more ODL information is added.

PHRtomorrow

My intuition is that patients will do much better than clinicians in moving toward this expanded view of PHRs.  Why?  First, clinicians have been taught primarily to value medical data; they will demand proof of value and need education about how to deal with often subjective patient experience.  Second, clinicians are already time constrained — we’ve all read about the average 7 minute doctor visit;  more information = more information overload.

A final takeaway was the critical need to separate the personal health application from the PHR data platform; for the purposes of this RWJF project, the 9 grantees worked with a common technological platform but built distinct PHR applications to run on the platform.  Distinguishing between platform and application lowers barriers to innovation; it enhances opportunities for interoperability and allows for platform components to be reused for multiple applications.

This distinction between application and platform also is a useful way to explain a major difference between Google Health and Microsoft HealthVault.  Google Health is both an application and a data platform; Google has provided an integrated PHR through which users can access their information as well as a data repository to store personal health information.  HealthVault is solely a platform; Microsoft is engaging 3rd party developers to create many applications, including multiple PHRs that can access the HealthVault data repository.

While attending the event, I had a lot of fun facilitating a panel session including representatives from Google Health, HealthVault, and Dossia.  I’ll let you know when conference videos are made available.

This was one of the most innovative and well organized conferences I’ve attended…congratulations and thanks to all!

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Discussion

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Comments

1.
On September 19th, 2008 at 6:41 am, Jon said:

Stimulating analysis, and we enjoyed your provocative session with Dossia, Google and Microsoft.

The Center for Student Health and Life (www.cshal.org) believes that students will play a cutting edge role as early adopters of “wellness” oriented next-generation PHRs (see your chart on how PHRs are evolving). Check out our own blog thoughts on the conference at http://www.cshal.org/blog.html

2.
On September 21st, 2008 at 6:33 pm, Kevin McMahon said:

I’m glad everyone is starting to understand that a data repository isn’t the goal!

Based on the data I presented at ADA Scientific in 2006, we showed that a system similar to what is now being developed with support from RWJF is absolutely capable of engaging patients and changing behaviors – something a static PHR will never do.

In our work which began in 2001, we continue to show that done right, you can drop A1c’s (average blood sugar levels – the most widely accepted measure of diabetes control) by more than a full point. That’s only because everything from the device used to collect biometric/telemetric data to the methods used for collecting subjective/interactive data to the algorithms (rules engine) developed and tested that drive the finely tuned report formats to the patient and patient team interactions are just right. Done wrong it is annoying, silly and counter-productive.

Just talking about it and throwing something out there is easy. Getting it right is hard.

Any ideas when these projects will enter clinical trials to measure their effectiveness?

3.
On September 21st, 2008 at 6:46 pm, Kevin McMahon said:

ps – me again. I forgot to mention the most important part and you called it out Vince – patients have to be willing to do drive this and a one-time 5 minute sign up isn’t really what we’re talking about here. As our studies show, frequent participation over the long term is key. In our case, people with diabetes depend on it so much that they actually subscribe to our service as do hospitals. That’s a great test for any of these new PHRS – will the patient use it long term and is good enough to pay for it.

4.
On September 22nd, 2008 at 6:32 pm, Vince Kuraitis said:

Kevin, The Project HealthDesign projects were structured as proof of concept demonstrations…my guess is that most of these will fold their tents once the RWJF funding ends.

Vince

5.
On September 23rd, 2008 at 6:34 am, Kevin McMahon said:

huh? Spend time and money to illustrate what already exists at least for some of those 9 apps? Talk about funding a bridge to nowhere.