A few takeaways from the Project HealthDesign conference

Over the last week and half I’ve had a chance to talk with people about Project HealthDesign’s New Frontiers in Personal Health Records conference and follow the blog discussions on the event. James Ralston, the principal investigator for the University of Washington’s Project HealthDesign grant, pointed out to me recently that we went the full range from the user-centered design issues (e.g. how to get the most out of a small cell-phone screen) all the way to policy implications such as the need to alter reimbursement policies. And the conference had a similar range – there were a lot of concepts crammed into an 8-hour session. So here’s my shot at distilling them.

It’s not the record, it’s what you do with it. It’s a simple mantra, but it seems to be catching on. The previously dominant idea of a PHR as a window onto a medical record seems to be fading as more and more people (including policymakers) are recognizing that applications building on the record hold more promise to improve people’s health.

When end users are engaged in the design, the designs look different. At the start of this program, we postulated that putting the end users (patients, consumers, pick your term) at the center of the design process, they would come up with a very different set of PHRs and that’s exactly what happened. The designs are much more mobile, action-oriented, and unobtrusive than earlier visions of PHRs. The grantee teams were constantly challenged to fit their designs into the flow of people’s lives, to free the user from their desktop PC, to work within an existing calendar, rather than creating a “medical calendar,” to make use of the devices people already carry. The nine project videos underscored an important theme – that health is but an enabler (or disabler) of the lives we lead – not an end in itself.

Not everyone gets the PHR ecosystem concept. We (and others) have been pushing this idea for a while now, but there was a fair degree of confusion about it at the conference. The jargon isn’t so important and different people use different terms, but there are basically three types of actors in this ecosystem: 1) the source data providers (e.g. pharmacies, physician offices, hospitals, insurers) that hold parts of a person’s medical record; 2) the PHR platform providers (e.g. Google Health, Microsoft HealthVault, Dossia) that can assemble and maintain a person’s record from multiple sources and that offer application programming interfaces (APIs) for 3rd-party application developers; and 3) the 3rd-party application developers that build the very specific applications (such as those designed by the Project HealthDesign teams) that people can use to take care of their health needs. There are plenty of nuances – for example, the same organization could participate in all three levels – but the key is to allow for the separation of these three functions. Separating the functions enables competition and innovation in the space that markets traditionally operate very well – in meeting the diverse needs of end users.

The policy implications are far-reaching. We could have spent a full day and then some on the policy implications of next-generation PHRs and the PHR ecosystem described above. There are issues about stewardship of personal health data (made even more complicated by data that are user-generated, such as a data on medication usage, diet, exercise, etc.), issues of asymmetric regulation, where different types of organizations providing the same services face different regulatory schemes (e.g. some are covered by HIPAA and others are not), and, most fundamentally, implications for how health care is delivered and financed. The applications demonstrated at the conference make possible a very different patient-clinician relationship, one in which a good deal of data exchange and communication takes place between visits, which could become fewer and further between. That kind of relationship is not well supported in most arrangements today.

We’ve come a long way in two years. Much has happened since the launch of Project HealthDesign two years ago. We’ve seen the emergence of HealthVault, Google Health, Dossia, the iPhone, the iPhone apps store, Android, PatientsLikeMe and the Health 2.0 movement. The key elements of the ecosystem are in place – more and more providers with electronic record systems, platform offerings from major companies with huge consumer brands, and a rapidly growing developer community.

But there’s a long way to go. The reality is that the pieces are in place, but only a precious few have access to them in a truly connected way. Only a few leading health care providers have announced links to GoogleHealth or HealthVault – and we’re not at the kind of plug and play stage where my apps run seamlessly on my handheld, retrieving data from my consolidated record which is constantly updated by my various health care providers.

All in all, though, it was a day for optimism. A day that showed what could be, a day that displayed creativity and ingenuity, and above all, a day that brought together a lot of people who want to make the vision a reality.

Comments

[Vince Kuraitis]

Steve,
Excellent synthesis...thanks!

One suggested tweak -- the term PHR ecosystem doesn't sit well with me. As you note "It's not the record,it's what you do with it." This term also doesn't capture the critical contributions of the platform company players (Google, MS, Dossia).

My suggestion -- Personal Health Information ecosystem.

[Steve Downs]

Thanks Vince. I think you're right about the term. PHR puts too much emphasis on the record but at the same time it has some currency. Frankly, I always find the language in this field a challenge and I don't mean to coin, let alone promulgate, a new term. I'll leave that to others!

[PandaCam]

Great conference; I'm also very interested in the policy and care delivery implications in this "ecosystem," however we term it (see my pre-conference thoughts on PHR implications here: http://www.altarum.org/index.cfm?ID=302)

[PandaCam]

Oops, delete that final parenthesis mark in the URL I just posted --

http://www.altarum.org/index.cfm?ID=302

-stanley chin *(and yes, I should have thought of a more professional Typekey account name way back when...)

[Steve Downs]

Stanley,

You make a number of good points in the post you reference. On the policy side, I think the recent Connecting for Health Common Framework for Networked Health Information (see http://connectingforhealth.org/phti/ ) offers some "rules of the road" that cover some of the issues you raise (and a number of key vendors have signed on). I agree with you about social architecture -- it's challenging.