Health 2.0 Community Present and Vocal as Markle Foundation Policy Meeting Discusses "Consumer Access Practices for Networked Health Information" by David Kibbe

This meeting held by the Markle Foundation near San Diego  over two days  last week may turn out to be the most important health information and technology policy meeting of the past 5 years.  So I'll try to choose my words for this post very carefully.  If this increases the length somewhat, I apologize for that in advance.

Why was this meeting significant?  Simply put, the Health 2.0 community was involved. With Microsoft's Peter Neupert, Google's Missy Krasner, Esther Dyson, Adam Bosworth from Keas.com, Jamie Heywood from PatientsLIkeMe.com, Karen and Richard from Sophia's Garden, and representatives from MinuteClinic, Wal-Mart, Intuit,  Dell, eClinicalWorks, and Intel  present and vocal, this meeting had a different, and to my mind more open atmosphere than any other policy meeting I've attended.  It was not dominated by entrenched large health care enterprises, such as the  academic hospitals, Kaiser, health plans,  the large IT vendors, and the AMA.  In fact, those organizations were often on the defensive in the conversation, because they are perceived by some as not making it easy for consumers to get to the information they want and need.  In fairness to these and other incumbent groups who were present, I witnessed a new and a very welcome openness to discuss ways to get the data into the hands of the consumer.

Another reason concerns the excellent job done by the Markle Foundation, and David Lansky in particular, crafting a framework for the discussion, one that captures what is really going on with respect to health data and information storage, exchange, and use, and not just a theoretical construct of how it should be working.  Too many of these policy meetings over the years have represented merely a top-down view of incremental change favored by the entrenched big interests in health care.  This was a real breakthrough that should help connect Health 2.0 with public health policy.

The full document describing this framework, entitled "Consumer Access Practices for Networked Health Information" is not yet available for public dissemination.  When it becomes available I encourage you to read it, as I am quite sure that it will become a reference point for much health care public policy debate between now and 2009.  But its title alone tells you that we have moved beyond the naive and over-simplistic approach of "PHRs". Rather, Markle has lifted the discussion onto another level, and this time it's about health data, its ownership and rules of access, and its uses in our nation to promote health and wellness.  It's all about who makes the rules.

The framework that Markle provided was along these lines.  There are three major groups interested in and critical to consumer access for networked (Internet) health information, including:

a) Consumers and Patients (not well organized, but through Health 2.0 and other efforts, starting to increase their activism and to demand transparency of health care),
b) Consumer Access Service Providers (Global Internet Brands such as Microsoft's HealthVault, Google, Intel, Intuit, leading the way) 
c) Health Data Sources, (e.g institutions and provider organizations, clinical labs, health plans, pharmacies, PBMs, Medicare and Medicaid, etc.)   

The role of the Global Internet Brands is evolving very rapidly, but, succinctly put, they are providing platforms for "online banking-like information accounts" where individuals can store, manage, and use their own health information.   An ecosystem of smaller, innovative entrepreneurial companies is thus being encouraged to grow and develop.  They are building secure, authenticated onramps and offramps to and from this platform, so that the individual can transfer his/her data when desired, and also grant access to others, e.g. physicians.   

The Markle conference was a conversation, a very spirited debate at times, on the answers to these questions in reference to this framework :

1) What is required to "liberate" personal health information and data in electronic format from the institutional custodians, the Health Data Sources in the framework above, that currently create, store, and manage health data, but do NOT currently release or share the data widely?  What actions or incentives are required to enable Americans to get their hands on their own health data?

2) What rules should govern the organizations that acquire, store, and share personal health information over the Internet?  Are there trade-offs between privacy protection and access?  Is "privacy" used sometimes as an excuse for the institutions to cling to control over the data?  How do we avoid bad policy and bad legislation in this important area?

Finally, a distinctive characteristic of this meeting was the consensus on certain relevant, important observations and goals.  Everyone in the room agreed that patients are not very interested in PHRs, that is, in static collections of health information.  Rather, consumers/patients want service and value based on the content of their own data.  They're not looking for technological experiences with their computers or websites.  They're looking for ways to save money, get better information about care providers, and have a better experience with the health care system.   Consumers don't want online banking:  they want what online banking makes it easier, faster, or more enjoyable to do.  Similarly, patients don't want online medicine:  they want what online medicine enables them to do with their health and wellness data, which in turn will improve health and wellness.   This includes being able to converse with their doctors.

It was a consensus opinion that "data liquidity" is a very important short term goal, and should be pursued vigorously.  (How was left for another discussion, or perhaps we should discuss this here?)

There was honest disagreement about the extent to which the government needs to act to provide further assurances for privacy as access is invevitably increased.  The group tended toward agreement around this  proposition: it may be better to talk about 'fair information practices' than to talk about 'privacy,' which is confusing and has many meanings, sometimes different meaning to different folks.  Clearly, one of the most important 'fair information practices' is access to one's health information and data.  So, privacy rules that prevent access, or make access so complicated as to be prohibitive of access, are actually in violation of a person' "privacy rights."   Similarly, fair information practices must protect health data from unwanted exposure or breeches of security.  So, somewhere in there, there is a balance of interests for the consumer.  But there was intense disagreement with respect to the need for new legislation, with some people in the room feeling passionately that new laws were needed to replace HIPAA, and others feeling quite as passionately that this would lead to a new set of very bad laws that would stifle the innovation of social media sites like PatientsLikeMe.com .

From my perspective as a family doctor, I am worried that physicians are not yet embracing the kinds of change that Markle and Health 2.0  are helping to accelerate.  I believe very strongly that physicians, particularly primary care doctors using EHRs,  need to understand the importance of these policy issues and participate actively in the debates.  It is going to be quite relevant to independent primary care and family physicians whether or not they can gain access to their patients' health data over the networks, and important to them how much energy, time, and money are needed to gain that access. 

We are moving into a new world of health data access, transfer, storage, and management.   It is likely that systems used by doctors, hospitals, and patients (or their agents, e.g. Google Health) will converge with one another.   We now have many thousands of private networks, but we are moving towards just one.  Therefore, doctors and patients will access, protect, authenticate, etc. and otherwise behave on that network in increasingly similar ways.   I think that Markle has figured this out, finally.

David Kibbe

Comments

[John Norris]

Any chance some of this Health 2.0 meeting is on-line?

;-)

[John Norris]

Any chance some of this Health 2.0 meeting is on-line?

;-)

[Bob Coffield]

Fantastic post! Thanks for your insight on the issues discussed at the Markle conference. Your post inspired me take a few moments and provide some follow up commentary.

[Vince Kuraitis]

David,

Yes, health plans are skeptical of data liquidity for fear of being knocked off as king-of-the-hill for having most health information about "you".

...and doctors don't yet see what's in it for them.

My take though is that this can be addressed. It isn't the case that the value poroposition of data liquidity for doctors and health plans doesn't exist -- it just needs to be better articulated and developed.

For health plans, data liquidity promises dramatically to improve quality and reduce costs.

For doctors, data liquidity will fuel the medical home model and reimbursement reform -- doctors won't be able to optimize care coordination without a much richer and real-time source of information about their patients.

[jd]

Hmmm, the attitude towards health plans is a little odd here. You mention that there was an urge for "data liquidity" to happen quickly but not that there is absolutely no chance for this in the next 3-5 years (for the majority of Americans) unless data from health plans is used. One of the most significant data liquidity events in 2007 was the two-part agreement of AHIP and BCBSA to standardize PHR formats and to share data across plans when people switch.

True, the data is administrative or claims-based rather than the direct clinical record, but it is far from useless. And it is (or will be soon) the most comprehensive record out there in electronic format for a large majority of Americans until at least 2010, I suspect.

Isn't it worth thinking how that will play out? For example, until electronic medical records exist in many more clinical sites, do services like Microsoft HealthVault really have a chance?

It seems like we're trying to run before we walk.

[MG]

I was surprised to hear though that there were a few notable absences from the Markle Foundation event in SD:

1. CMS - How could the 800 pound gorilla in healthcare not be represented? CMS adopting PHRs in any form would dramatically alter the landscape over night. Surprised that someone from Tom Valuck's office wasn't there.

I really want to know more about their demo program with VIPS and how successful they have been at marrying claims and clinical data (where this is all really headed down the road in 3-5 years probably).

2. EMR vendors - Epic doesn't publicly comment on their MyChart PHR application but it really isn't hard to figure out what is going on their since delivery organizations like Cleveland Clinic, KP, and Group Health have been pretty forthcoming about how they have leverage their Epic systems/MyChart PHR app to build their PHR applications.

Still, I heard that besides eclinicalworks there wasn't a good representation on behalf of EMR vendors. Kind of surprised by this. Were reps from Allscripts, GE Healthcare, Cerner, or McKesson there?

3. Actual payers - Heard that vendors who are providing PHR-claims based solution to payers where there but what about the actual payers themselves? Heard that HCSC was represented but that there was no reps from the large national guys like Aetna (ActiveHealth Mgt), Wellpoint, and UHG.

[Alan Lawson]

Greatly encouraged to hear a new model is emerging for electronically enabled healthcare. A few observations and heart felt opinions:

- The role of the employer should not be overlooked…at the end of the day, they or the taxpayer are paying the health care bills. Their influence is potentially enormous if they act as a cohesive group.

- The federal government WILL play a role – the only question worth discussing (IMHO) is how to influence that role to be more positive than negative. I would use the historical example of “rural electrification” as a positive role of government that could not have been played by any other entity, and which allowed national infrastructure to settle on a new defacto technology standard (110V, 60 Hz, available everywhere) – DC is in a major state of flux – if the community has the clearest message, it might stick, the politicians can be counted on doing SOMETHING, let’s give them the chance to do the RIGHT THING…The federal govt is also a huge employer and the largest payer…

- International implications? – are we building a USA silo by accident if we do not give at least cursory consideration to international adoption and participation?

- I applaud the maturity of those who continue to be INCLUSIVE of their detractors – at the end of the day, reconciliation is a pre-requisite for the refocusing required for a positive future. And, as someone smarter than me has said “never forget that reconciliation happens with your historical enemies, not your allies”.

[gjudd]

another in an array of terrific posts from Dr. Kibbe. However, I was brought up short by this paragraph:

"It is likely that systems used by doctors, hospitals, and patients (or their agents, e.g. Google Health) will converge with one another. We now have many thousands of private networks, but we are moving towards just one. Therefore, doctors and patients will access, protect, authenticate, etc. and otherwise behave on that network in increasingly similar ways. I think that Markle has figured this out, finally."

I completely agree that there will be significant consolidation of personal health information management utilities. I also believe there is almost zero chance that a 'movement' toward just one set of conventions will ever arrive at the presumed destination - nor should it.

Dr. Kibbe's summary of the SD conference notes that one of the difficulties of foregoing conversations around EHR or PHR has been acutely recognized: specifically, the 'naive and over-simplistic' assumption that health info sharing needs are monolithic, are homogenous, that one size might fit all.

The exaggerated Pareto distribution of health services demand and expense means that labeling the entire expanse 'health care', and proceeding to behave as if all under the label was homogenous, is misguided. Doing so severely constrains on our ability to think about or act on concepts for improving health information sharing standards, because it assumes considerable uniformity of potential demand for capabilities, features, accessibility, and so on. The result is almost predictable, and should be recognized by anyone familiar with the larger debate about health care 'reform': "PHR/EHR generally is in sad shape - but MY PHR/EHR is great".

[christopher]

I am thrilled to see the conversation occurring in SD. Liquidity of data is imperative and a key enabler of cost and quality transparency. So in the same manner that patient data must be able to securely and seamlessly migrate between Providers, the simple act of identifying and validating Provider-specific information must be consistent and easy.

To that end, we (change:healthcare and 2 other Health2.0 companies) have agreed upon an open spec for a dCard [doctor card]. Just as MSOutlook has a semantic standard for exporting one's contact info, it seems silly that Providers do not have a simple means to export and exchange professional data about themselves and their credentials, board certs, etc)

Also, just as the facebook crowd has expressed frustration of the lack of interoperability of social-networks, Providers who participate on Sermo and Within3 and have YellowPage ads, and maintain admission/facility credentials can leverage the new standard. The dCard allows for easy portability and SYNCHRONIZATION of Provider information as directed by the Provider.

We'll be publishing the spec shortly now that all 3 companies have signed on and are adopting the spec.

christopher

[John]

Nice summary of the SD event David, though curious as to your comment that this was potentially the most important tech/health policy mtg in the last 5 years.

Really find that hard to imagine when many significant stakeholders in the debate were simply not there. Yes, all the big names in the Health 2.0 hype-cycle were present, but let us not forget those holding the data and what incentives will be needed to release that data. Without their active participation, about all this talk will accomplish is the lifting of a balloon.