Yesterday, I had the honor to present to Sec. Leavitt and the AHIC on trends and projections for personal health information. As I had only a brief 10 minutes to work with, I needed to put together a dense set of slides to hit the high points of what is happening in the PHR market. Below is the presentation.
[slideshare id=536565&doc=jmooreahic72908-1217511235869363-8&w=425]
Several others presented as well including Carol Diamond from the Markle Foundation, Jeffery Blair from the Lovelace Clinic, Sean Nolan from HealthVault, and Will Crawford from Dossia among others. The purpose of our collective presentations and following on Q&A were to educate those in attendance on where we are today regarding the ability of a consumer to manage their PHI and where we were headed in the future. Of course, being in front of so many policy makers, it also provided us an opportunity to provide policy guidance to encourage future adoption and use of PHI.
Surprisingly, Google Health did not send anyone, though I heard they were invited. Odd, Very odd.
Makes we wonder just how committed Google is to the health sector when they cannot find an individual to represent them at such an important event. Then again, maybe it is just a certain level of arrogance at Google wherein they decided that this administration is coming to a close and the future of what AHIC will become remains uncertain. Either way, a poor move on their part.
Back to the event.
I was quite impressed with the attentiveness Sec. Leavitt showed throughout this morning session. He took copious notes and asked several thoughtful and probing questions. Clearly, he takes this issue very seriously.
Unfortunately, I am not sure I can say the same about others who were present. Several questions and comments from AHIC members were clearly designed to derail any move towards personal control of health records. The usual Fear, Uncertainty, and Doubt (FUD) issues were raised such as the specter of privacy, the consumer at risk, the physician at risk, that PHI is not important for the advancement of health, etc. There are strong vested interests among those on the AHIC committee, thus not too surprising to see so little substantive action come out of the AHIC since its formation.
Key points & metrics:
- Privacy is on everyone’s mind when it comes to PHI, though many agree that all the consumer wants to know are answers to two basic questions:
Who will have access to my record?
What might the information in my record be used for? - At Kaiser-Permanente consumers now simply expect their physician(s) to be digitally aware and connected. Adoption continues to accelerate and their members are increasingly engaging with their physicians over the Internet. Viewing lab results online is the most used feature of My Health Manager with 1.3M results viewed monthly.
- From Jan-June 2008, the VA’s HealtheVet PHR had 4.1M visits. HealtheVet now has over 600,000 active users.
- Reconciliation of multiple medical records from multiple providers for an individual to create a single, coherent, longitudinal record is proving quite challenging. This is not an easy task to automate.
Final Impressions:
There are many good people at HHS and on the AHIC that are working very hard to advance the quality of care. There were several at this meeting that are beginning to believe that the PHI market may indeed be moving far faster than the ability for government to respond, which honestly, may not be a bad thing. My biggest concern is that given time, government may actually do more harm than good in that given sufficient time they would put together confining prescriptive polices and regulations that would hinder innovation and follow-on adoption, rather than foster it. This led me to close my own comments during our session with the following:
What we need today are not prescriptive policies and definitions, but guidelines. When developing policies, think as though you are putting up guardrails to help guide adoption and use of HIT rather than laying down railroad tracks.
Hopefully, they were listening.
John,crisp presentation on current state of affairs .
One note on your slide #4 . As a consumer , affected by Parkinson , I suggest you make a distinction between consumers 4a ”managing health” and those 4b ”managing disease” . Your assessment regarding the relevance and or rating ”attributes” only applies to the healthy lot – from my own experience with the PatientsLikeMe community and value add , albeit on a very specific disease , … I would put in a lot more greens ! Disease specific consumer websites represent by its very nature a tiny percentage of the consumer market – but they sure act like the pioneers.
PS have a professional interest in PHI as well…
Hello Dutch Treat,
You make a very important and relevant observation. As I only had 10 minutes to work with, I needed to take a “high level” approach to this presentation. If only I had more time…
Yes, there is a distinct difference between those managing health and those managing a disease and it is the latter that are actually adopting and using these systems. That being said, the vast majority of solutions for PHI mgmt, whether for wellness or disease mgm are as I describe them in slide number 4 and they really do not deserve more “green.”
PatientsLikeMe (PLM) is an absolutely brilliant concept and extremely well-executed. They are also not the norm, but an outlier (in a good way). As they are based here in Cambridge, I have had the pleasure to meet with them at their offices. Note that when speaking with the Heywood brothers, they both adamantly deny that PLM is a PHR or PHI platform. During the discussion period at the AHIC mtg, I did make reference to PLM as a unique, alternative model and an example of the consumer’s willingness to forgo some privacy as long as they believe it is for the better good and they receive value far greater than the risk. Also important to note that PLM is very transparent in stating what they intend to do with the data provided.
And isn’t that the bottom line? It’s not so much an issue of privacy, but more an issue of how will the data be used and what value will I get by putting my PHI into your system?
All PHR vendors and PHR sponsors need to articulate that message to the market. Unfortunately, few do so today.
Your comments about the meeting are quite interesting. Was Kevin Hutchinson from Prematics there? I have had some interaction with him, so am curious if he commented.
Glad to hear that Secretary Leavitt seemed to take the presentations seriously. The composition as well as existence of the AHIC seem to be that of many “advisory” committees – not advisory in a good way, but there to protect the vested interests in the industry that live off of tax-payer funding.
I agree that Google’s absence is surprising. Also the absence of Medem whose iHealthRecord predates many PHRs and is a good product that from my perspective Medem has failed to exploit in many opportunities that arise out there from offering linkage to an EMR system (readily doable through the use of web services) to collaborating with the Dossia project at several point when the company had a chance.
Wendell,
Kevin was there and unlike some others on AHIC kept a fairly open position on the issue of PHI, was actively engaged, and asked a couple of good, clarifying questions.
And yes, many AHIC members seem to represent one organization or another, often working at cross-purposes to one another. It’s unfortunate.
Medem has been around awhile, but so has CapMed and for that matter FollowMe. All provide a different value proposition t the end consumer. I am not as big a fan of Medem as you are and believe there are now other solutions in the market that do the same thing and more. And no, it is not surprising that Medem is not associated with Dossia as Dossia is really focusing on claims data right now and the PHR systems that can readily handle such, something that is not exactly a core competency of Medem’s.
I know from a comment you made a while back in the WJS Health Blog that you do find Medem particularly noteworthy. I only cite it to counter the attention given to Google and Microsoft offerings while there are other existing, functional products. I have not made much of an attempt to look for others such as those you mention, but will take a look at them.
I have zero inside knowledge of what has gone on at the AHIC and its various committees, but given the manpower involved the results seem meager. The spending regarding “privatization” studies by Booz Allen Hamilton and some other company and the grant of $13 million to Brookings and LMI for “AHIC 2.0” are a complete waste. I looked at the Booz Allen presentation document. I believe $500,000 was paid for that. The analysis is something that you or I could do in a week or two without any prior knowledge for considerably less than $500,000. Nothing wrong with the presentation and analysis however.
I realize this is either is “miniscule potatoes” relative to other wastes of tax-payer funds, but to see it in action is galling.
From the outside regarding Dossia, I still cannot figure out its strategy and goal. Why the company would concentrate on aggregating claims-based data given the its stated goal has to do with clinical data makes no sense. Also evidently the entity that Dossia contracted with – a non-profit “institute” in Portland OR – was trying to create a PHR from scratch from what I read a while back.
From the brief flurry of news at the time Dossia and that institute parted company the institute apparently was not making much progress, although I did not follow the details. A link regarding the current arrangement is this which states that Dossia will use Invido which is a FOSS product, apparently squarely aimed at clinical data:
“On September 17th, 2007, the Children’s Hospital Informatics Program and the Dossia Consortium announced that they would be partnering to make the Indivo PCHR the core of the anticipated Dossia Personally Controlled Health Record system. Dossia will provide resources to extend the core Indivo functionality and server architecture, which will remain open source and freely available. CHIP will also serve as an industry adviser to Dossia as the consortium pursues development of a national PCHR ecosystem.
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