PHRs: They're Hot, They're Sexy, But What Are They, Exactly?

Dec 14, 2006, 9:15 AM, Posted by Steve Downs

With apologies to Rolling Stone and Jim Morrison for the headline, it’s time to acknowledge the obvious: PHRs, or personal health records, are definitely in vogue – well at least among the health IT crowd, at any rate. I’ve just come back from the annual Connecting Americans to Their Health Care: Empowered Consumers, Personal Health Records, and Emerging Technologies conference(go here for the archived web cast of the plenary sessions), which we co-sponsored with the Markle Foundation and a number of HHS agencies, and among this substantially-sized (500 plus) crowd, PHRs are all the rage. We had representatives from consumer organizations, policy makers, PHR developers, researchers, and, in a sign of the times, some major tech industry players. Google, Microsoft, Intel, and Intuit (the Quicken and TurboTax people) were there and there in numbers. And among this crowd, there’s a lot of excitement and enthusiasm to move forward with PHRs. Rep. Patrick Kennedy, one of the keynote speakers, is even sponsoring legislation that would provide incentive payments to physicians for each patient of theirs who uses a PHR.

So we’re all in favor of PHRs, but it’s not at all clear if we’re talking about the same thing. Generally speaking, people refer to PHRs as online access to your medical record. It gets interesting and a bit confusing when one

starts to define the medical record. Is it the record that one provider or provider system maintains (see the EHR portals like MyGroupHealth)? Is it the combined records of multiple providers? Is it a record compiled and maintained by the consumer herself, perhaps derived from the shoebox of past invoices, lab results, and other artifacts of care encounters? These discussions get even more interesting when we move beyond the information that is typically stored in a provider’s record into the realm of readings and observations generated outside the health care setting. Someone may keep detailed notes of each headache he experiences. Sensors embedded in one’s bed can provide valuable data about sleep patterns. And what to do with the data from frequent blood pressure readings at home? Most PHR discussions tend to focus on the typical provider-based medical record while allowing for the potential for “patient-sourced” data. This reflects a perspective that the value of PHRs is in providing a person with access to the same information available to his or her care team. To oversimplify, a person should be allowed to know as much about herself as her doctor knows. In my mind, we should flip this thinking around and recognize that people know more about their bodies and their experiences than any health care provider could possibly know, and, augmented by some technologies, people could capture and share this knowledge much more effectively with their providers. 

One of the conference presentations that captures this point was Intel researcher Eric Dishman’s discussion about his work on Parkinson’s Disease. Parkinson’s is controlled (with great side effects) by medication. Balancing the beneficial effects of the medication with the detrimental side effects is a daily challenge, complicated by the fact the severity of the disease varies from day to day and even hour to hour. However, Parkinson’s suffers are typically assessed and have their medications adjusted by a neurologist every several months. As a result, they can be assessed on a particularly “up” (or down) day and the resulting medication change is then based on an inaccurate assessment. Eric’s team is looking at affordable technological means to measure this severity in the home so that medications could be adjusted almost continuously in response to the changing severity of the disease. Even if the medications were only adjusted infrequently, the daily recordings of the disease severity would provide a neurologist with a very different picture of the person’s response to the disease than the snapshot that comes from a bi-annual exam.

So where do these daily recordings of Parkinson’s severity fit in our different PHR schemas? They'’re not really part of the provider’s official record, are they? (Or at least not until a provider has seen them). But if I’m a Parkinson’s sufferer, I’d want them as part of my personal health record, if only so that I could share them with someone who could use them to understand the disease’s effect on me. Patti Brennan, a professor at the University of Wisconsin and director of RWJF’s Project HealthDesign program, once said something to the effect that we have to free ourselves for the idea that we should each have a single personal health record – that each of us should ever have one repository that contains all of our health information. Dishman’s work suggests that there are at least two – the official record maintained by a provider and the information maintained by an individual. However, even the latter approach reflects the metaphor of PHR as a book that we read rather than PHR as sources of data that can be used to support functions and actions. Moving beyond the record to think about the functions and actions the data and the record can support is the idea behind Project HealthDesign, but that’s a topic for another day.

This commentary originally appeared on the RWJF Pioneering Ideas blog.