Academics and PHRs: RWJ’s Project HealthDesign Rolls Out the Carpet

Last week, the Robert Wood Johnson Foundation (RWJ) hosted a one day event in Washington DC. Purpose of the event was to showcase the nine PHR-type solutions that have been developed under the multi-year, $5M Project HealthDesign (PHD) umbrella. Seven projects were funded at academic institutions the other two, beltway bandit consulting firms.

Though I was unable to attend due to previous commitments, here is what I have been able to put together based on my conversations with several who did attend and my knowledge of PHD and the projects supported.

  • Over 200 in attendance with strong representation from policy folks (after all it was held in DC), institutions that were being funded, advocacy groups (again, mostly those from DC area), some health plan reps and an ever so small smattering of business entities, i.e., those who are already developing or offer a PHR solutions today.
  • Wide ranging agenda that had a Who’s Who of policy folks (e.g., Karen Bell of HHS, Carol Diamond of Markle and of course several from RWJ), Amy Tenderich of DiabetesMine (she did her own post on the event), and of course the researchers who presented their concepts/prototypes. There was also a panel on the platform plays with representatives from Dossia, Google & Microsoft. (Note: I’ll be moderating a similar panel at the end of October at the Connected for Health Symposium.)
  • Good discussions and novel approach to providing demonstrations of the PHR prototypes. Demonstration consisted of a slick video (professionally done with actors, scripts, common props (the PHR/PDA-like, hand-held device, etc.) produced by RWJ for each of the nine projects. You’ll find them here.
  • Provided a good opportunity to network with a certain segment of the industry, policy wonks, advocacy reps and academic researchers.
  • Some interesting concepts and prototypes presented of what may be possible in the future. Many of the researchers spent significant time working directly with consumers, observing how they manage their health today as part of the development process, which was followed by a design process that focused strongly on usability. (Many PHR vendors today could learn a thing or two here!)

Assessment from afar

From this vantage point, here is my assessment of PHD to date.

  • When initially conceived, in late 2005/early 2006, probably looked like a great idea with PHD leadership thinking along the lines of: “let’s sponsor some innovative ideas/technology around the concept of enabling consumers to more effectively manage their health that goes beyond a simple, static health record account (PHR).” But a lot has happened in the intervening years and now the results of this funding appears more quaint than thought-provoking.
  • RWJ’s underlying mantra for PHD is:

It’s not the record…

It’s what you do with it!

Couldn’t agree more. As I wrote recently when profiling the new CapMed notification feature. Static PHRs are dead in the water.

  • Choosing to go solely with academic researchers and beltway bandits without any conditions for commercialization was a huge blunder. Yes, I know the whole argument for letting researchers think out of the box in the creation of new solutions, but let’s bring at least a modicum of reality to the table. Having worked in academia with arguably the top university when it comes to commercialization of research, MIT, I know personally just how tough an issue this is and how many great ideas end up on the shelf (yes, even at an esteemed institution such as MIT). It appears that RWJ’s PHD and those it has funded have no plans to commercialize any of this work. Spoke to one businessman in attendance who actually approached some of the researchers and ask about commercialization – each and everyone gave him blank stares. Really a shame.
  • PHD has also funded development of an open platform. This began awhile back when they published “functional requirements for PHRs” which ironically, was the same terminology that HL7 was using and announced at roughly the same time, so here was one small confusing step made, at least confusing for me making me wonder if they RWJ was out-of-touch. Now they created a Common Platform construct that is quite familiar to another “Open” platform, that from Children’s Hospital in Boston, Indivo Health. Indivo Health has been around for several years also will be the underlying technology for the employer-led consortium Dossia.

This all leads me to thinking. What is PHD (and more broadly RWJ) trying to do that is truly different and will move the industry forward and ultimately enable consumers to more actively participate and manage their health? When I sum it all up, I do not get much more than bringing more visibility to the consumer on the concept of self-care management.

Which leads me to the follow-on question: was this the best use of that $5M?

Maybe yes, maybe no.

Yes, in that when they started this initiative, RWJ was looking to expand the concept of what a PHR is and what it might be capable of. From their vantage point, PHD may have appeared to be striking out in a whole new way as to how a consumer may leverage IT to better manage their health. And of course, there is the publicity angle. Getting the word out and educating consumers about what may be possible is indeed needed and this initiative by RWJ has generated pockets of publicity.

However, I lean more towards no. Their decision to go almost solely with academics and consultants resulted in a program that appears out of touch with what is occurring in the market. Numerous examples support this including: the slight mis-step with the Functional Model announcement, funding the development of an open platform when one already exists (see Indivo Health), and supporting development of apps without any discussion of what is the business case (i.e., is there commercialization potential). Let it be known, I have no beef with academic researchers and am actually a very strong supporter of academic research, but I lean more towards supporting basic research, not applied. In this case it was even worse, supporting applied research without a technology transfer strategy. As mentioned previously, this may have been purposeful to encourage out-of-box thinking, but I find this most often results in nothing more than mental gymnastics if you do not attach fundamental market principles to the process. Unfortunately, the results of mental gymnastics almost always end up on the shelf, not in the market.

Bottomline:

RWJ receives a round of applause for bringing together some of the leaders, albeit more from non-profits than for profits, to discuss how consumers may leverage such IT tools in near future to better manage their health. Their support has resulted in some very good work (some of those demos are excellent and I really liked the Sujansky & Associates Report – PHD Platforms and Standards Analysis) and trust more is forthcoming. In the future, however, I do hope that RWJ looks more broadly soliciting greater involvement of those directly in the business of creating new and novel consumer-facing healthcare apps. Such involvement in RWJ’s deliberations and programs will result in even more fruitful research with even greater impact.

And is that not what we all are striving for?

For views from others who attended the event see:

Post by RWJ

Post by Vince Kuratis, moderator of the platform panel session

Amy’s post – she gave the luncheon keynote

Ted Etyan’s views (slim content with pictures)

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Posted in Consumer Engagement, consumer health, policy Tagged with: , , , ,
2 comments on “Academics and PHRs: RWJ’s Project HealthDesign Rolls Out the Carpet
  1. Ted Eytan says:

    Hi John,

    Sorry you couldn’t be present. You forgot to check the Twittersphere in your review of views. There’s more content out there than just blogs that we have to follow…:) The other issue that day was a pretty severe bandwidth shortage – unless you were a Verizon customer in that room, you didn’t have much.

    You’re correct that my content was slim. I ended up focusing on the essence of what’s being discussed – what I can learn and take away, rather than in summarizng the event (despite Jen’s encouragement to livetweet as much as possible….) Unfortunately essence is hard to get unless you’re in the room, so maybe for your audience a few thoughts:

    - The teams involved patients heavily in the work. This is a big difference from other efforts I have seen, and it came across in so many ways in the demos. A piece of information for a patient was formatted in a way that made it more “theirs” than “the doctor’s” – a common pitfall in some systems today. This is an innovation. There are many many little things throughout that the industry can and should take to really make these systems about records that people can do things with.

    - The project has produced very useful content in the translation of its work to currently available platforms, which point out some future requirements in current standards, such as the iCal standard, that needs additional fields to be usable in patient self-management. These are available on the Project Health Design website.

    - And then there’s essence. It’s still surprising to me the number of health professionals who feel that patients aren’t interested in understanding and managing their health. I tweeted this quote during the event: “”People are thinking about their condition all the time.” Yes and thank you.” This is important paradigm change that these teams are reinforcing in their work. People like me need this content, because beyond the $5 million, there’s something around $2 trillion being spent with the assumption that the physician is the one who does all the thinking.

    - The brush of “academics” that’s being painted is a pretty broad one. We complain that health care doesn’t spend enough time listening to industries outside of itself, and yet I found myself watching the work of a user-centered interface design expert from Colorado who decided to leverage her talents for health care. That’s pleasing to me.

    Disclosure for me is that I do work part time for the California Healthcare Foundation as a consultant. One of the teams’ leaders, James Ralston, MD (a practicing internest), is a former colleague of mine at Group Health Cooperative. I am not a grantee of Project HealthDesign and not funded by RWJF in any capacity. I am not in a position to value whether the $5 million is worth it or not, but I thought I’d take the time to beef up the information I took away from my time at the expo.

    You continue to create a great space for discussion and we should all look to see how this work influences the growth and development of patient-centered health information technology. Hopefully see you at Health2.0!

    Best,

    Ted

  2. I think this is a very interesting discussion.

    One of the issues with inplementing a health record which is more accessibable and managed by the patient is enabling health professionals to make entries with out creating huge amounts of extra work for them.

    Information entry needs to be seamless incorporated into the health professionals workflow. Not always easy when they are rarely at a desk.

    Have you heard much discussion this from this angle?

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  1. [...] The PHD team is seeking input, particularly from the private sector, (hurrah, we were a bit disappointed in lack of such in round one) as to how they should structure the grant proposal, both from an IP perspective and how data from [...]

  2. [...] to HealthVault, Google Health and in close proximity to Dossia’s launch) wherein a number of academic research institutions who had received competitive grants set out to develop new consumer-facing personal healthcare apps (PHAs).  Early in the development [...]

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