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Feds Set Example for Data Portability

by John Moore | September 07, 2010

The Personal Health Record (PHR) market is fraught with challenges. First there is the issue of getting personal health information (PHI), which is most often not in a common digital, computable format such as a CCD or CCR-based file. Even when PHI is in a common data standard, such as administrative data (claims data), that data can be fraught with errors that would confuse even the wisest and most knowledgeable of patients.  Then there is the issue of simply getting the data from an institution. Many institutions have a patient portal allowing a patient to access and view their PHI (most often a limited subset of the patient’s complete record) but very few institutions actually support PHI portability, though that will change with new meaningful use guidelines (Stage One: patient to receive digital copy of records upon request).

And last, but certainly not least is the issue of consumer education and engagement.  Yes, consumers are turning to Dr. Google in ever increasing numbers to get a second opinion, but very few consumers proactively manage their PHI. After several years of studying the PHR market, it is still extremely difficult to tease out what exactly is holding back consumers from taking a more proactive approach, but our hunch: Like most things in life, the value proposition for the average consumer to use a PHR to proactively manage their health has not materialized.

Value = Reward – (Effort + Risk)

Ideally, reward far exceeds the combined effort and risk to perform a given action, in this case create and maintain a PHR.  Now plenty has been written on the subject of privacy and security of PHI (the primary “risk” factor in self-management of PHI) and Chilmark has made its views known in the past so we will not dig into that rat’s nest.  Simply put, technology and regulations are in place to insure privacy provided they are used and regulations are enforced.

The effort side of the equation is basically; what effort does it take to create and maintain one’s PHI.  If you want to do it digitally today, good luck – its truly a mess out there and not for the feint of heart. But the situation may change quickly in the future if a couple of critical activities truly take hold.

First is the the success of EHR adoption via the HITECH Act. If institutions, large practices and even smaller primary care practices take advantage of this program (far from a done deal, especially for small practices), consumers will be able to obtain a digital copy of their PHI.

Second is the initiative being led by the Veterans Administration (VA) and the Center for Medicare and Medicaid Services (CMS) called the “Blue Button” initiative.  President Obama first brought attention to this in a speech on August 3rd, but it was not until last week that the VA formerly announced the vets who use MyHealtheVet (the VA’s own PHR), would be able to download their PHI to their computer via the Blue Button.  CMS is slightly behind in its roll-out, but both the VA and CMS state that the Blue Button will be fully operational by early October when they will do the “Big Launch” at the Health 2.0 conference in San Francisco.  In conjunction with that launch, the Markle Foundation and Robert Wood Johnson Foundation have announced a “Developer’s Challenge” to see what great innovative ideas software developers may have for a consumer who now has his PHI via the Blue Button (there are already 9 companies who have signed up for the challenge).  The Markle Foundation has also released a very good policy paper (full disclosure, Chilmark Research was on the committee that helped put this paper together) that addresses issues that other institutions should take into consideration should they choose to adopt the Blue Button for use by their patients.

The Blue Button, should it become ubiquitous on health institutions’ patient portals (or for smaller practices, simply on their website), payer-based PHRs, employer-based PHRs (often just a PHR provided by payer), and even regional or state-wide HIEs, the effort that it would take for an average consumer to gather their data to create a longitudinal record could be simplified significantly.  Going back to our equation above, the value would subsequently be amplified.

But the devil is in the details and details abound.

As wonderful and simple a concept such as the Blue Button is, it is by no means straight-forward.  First off, the VA’s Blue Button sample data set (ASCII files) is based on clinical data, whereas CMS data is administrative (claims-based).  These are two quite different data sets and how we roll these out to the broader public will create some significant challenges, particularly, as in the case mentioned previously, CMS data is filled with errors. This may partly explain why CMS is taking more time to evaluate its approach to providing access to claims data via the Blue Button.

Then there is the issue as to how broadly the Blue Button will be adopted. Payers have been notorious in their reluctance to make consumer data truly portable.  In 2009, payers did make the important move of supporting data portability between plans (ASC X12) of PHI, but whether or not that data can be relinquished to a consumer for them to control is something left to individual payers to decide and to date, most have been extremely reluctant to relinquish control.  In a recent conversation with an AHIP technical head, Chilmark asked about their opinion of the Blue Button; needless to say, their response was not one of strong endorsement, more a wait and see.

And that may be the future of the Blue Button – Wait and See.

It is a bold step forward by this administration to ultimately drive value back to the citizen in providing citizens a relatively easy process to gain access to and control of their PHI and for that they are to be congratulated.  It is our hope here at Chilmark Research, that rather than sit on the sidelines and play a wait and see game that a wide range of organizations, from payers, to providers (e.g. true leaders in the PHR space such as Kaiser-Permanente, Group Health, etc. as well as the laggards) to software developers (from the largest EHR vendors to those small innovative start-ups that have signed up for the developers’ challenge) all take a proactive role in support of the Blue Button as frankly, there is no better option then this one on the horizon that will support true consumer access and control of their PHI.  Maybe the Blue Button is just what the nascent PHR market needs – we certainly see it as a possible key factor in the future development of this market.

Addendum:
Margalit Gur-Arie has written a very good post, slightly different slant on the subject as well which is worth the read.

Stay up to the minute.

“As biometric data becomes cheaper and easier to collect through smart sensors, devices, and mobile apps, expect to see more innovations in consumer health.”

-Alicia Vergaras