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, IntuitDell, 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

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