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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.

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

20 responses to “Feds Set Example for Data Portability”

  1. Gerald Theis says:

    As a small start-up nitch PHR frim the readon I remain optimistic is that I designed my technology as a pure consumer-driven model so that the vital medical data is accessible during a personal medical emergency. Affortable, readible, interoperable, remote, secure, functional, private. Since we asssit in the maintenance of the PHI will solve the challenge of sustained data integrity.
    Jerry Theis, LCSW

    • John says:

      Jerry – there is reason for optimism and hope that was expressed in the post. The Blue Button effort is an example of the Feds taking a leadership role in promoting consumer access and control of their PHI. Chilmark’s hope is that leading by example others will follow.

  2. Jeff Brandt says:

    John, Thanks for the article. It is very interesting how the different government agencies are going about moving or should I say, planning to move PHI. NHIN, NHIN_Direct, Blue Button, State HIE… I feel it will be a while to we see any real Meaningful Use in this area. We have a term in engineering call “not invented here” syndrome. which should be considered before bring any new systems on line. A good systems architect always look what is available off the shelve before build their own. NHIN_Direct decided to utilize SMTP email protocol for their system. I am not so sure this is the best idea but they are thinking on how to make a system cheaper with off the shelve solutions. My question is; have we overlooked the PHI repository systems available on the market today? HealthVault, Dossia, and Google Health would make very good PHR for exchanging data and providing patient with a copy of their PHI. One could say there are also problems with these solutions but, at least we are not starting another system from scratch.

    I hope someone has a roadmap or the cost will get exponential very quickly,

    Jeff Brandt

    • John says:

      THe Blue Button is NOT a data repository (HealthVault & Dossia) nor a PHR (Google Health), but simply a mechanism by which consumers can gain access to and control of their PHI. Once a consumer uses the Blue Button to securely download PHI to their computer, they can then upload the PHI to a PHR or data repository of their choosing, be it Google Health, HealthVault, Dossia. Heck, they could even upload the PHI to your company’s PHR, provided you could accept an ASCII text file and map it to your data model.

      • Jeff Brandt says:

        John, Thanks for the clarification. If blue button could provide a CCR or CCD as an option that would help to facilitate the uploading of PHI. As long as it has meta data we are good.

        Jeff Brandt

  3. Brian says:

    In my experience, many patients who want to manage their own health information do so in a way that is detrimental to the objective evaluation of complaints. Whom is this supposed to help? Am I missing something?

    • John says:

      Not quite sure what you are getting at with your comments Brian. Yes, there can and will be some challenges with consumers managing their PHI, thus the need for education. But the potential benefits (more engaged and educate consumer who becomes an active participant in care team) far outweigh the risks.

      • Jeff Brandt says:

        John, I spoke with a CMIO of a large health organization recently and he told me that PHI in a CCR is of no use to their organization at all. He said they only wanted CCD with structured data. That is, discreet data not free text. In summary, he had no use for PHR data.

        Jeff Brandt

      • Jonathan Halvorson says:

        Response to Jeff: by “In summary, he had no use for PHR data” did he mean anything other than “Our existing workflows do not accommodate using this data?”

        It strains credibility to believe that self-entered data couldn’t be useful. The mhealth report you reference is an example. Even most physicians would like to receive real-time home monitored data on things like weight, A1c, etc. At the moment, a PHR is a more likely avenue for this than an EHR.

  4. Brian says:

    John, just hoping to get pointed to the evidence that patient managed HPI improves outcomes, reduces waste, or has any documented benefit.

    • Jeff Brandt says:

      Brian here is a link to an article from Deloitte mPHR. I don’t think this is classical clinical study, but good info.

      I see the patient managed PHI as an annotation as well as augmentation of the legal EHR. I have found errors in my own record, which could have effected my outcomes. My sister was miss-diagnosed with a blood disorder which she has not been able to correct because of a technicality where the provider lost his license to practice. This has effected her ability to get health insurance. I would wager that all patients have errors in the medical record that an annotation could be of help.

      Jeff Brandt

  5. Paulo says:

    Excellent article John!
    I agree that with control & transparency improved engagement, accountability and health outcomes will follow. I tend to think of a person’s credit score and access to their financial info as an interesting analog. Would anyone tolerate a bank(or other financial institution that you do business with) not telling them how much money they had in their account or what a transaction costs?! Why does this issue even need to be debated when in comes to your health information? In 10-20 years we will all wonder why this was even an issue.

    I liked the value equation. I would suggest that each individuals perception of value, reward, risk & effort is distinct. Blue Button will increase value by decreasing effort. We need to increase the reward with a similar effort. Maybe we can have a direct to patient P4P for better outcomes or a health score that reduces OOP costs and/or health insurance premiums…

    Keep up the great posts John!

    Paulo Machado

  6. Jeff Brandt says:


    “he had no use for PHR data” this was pretty much a quote. Workflow, I assume, was one of the issues, but I know which EHR they are using and there is plenty of free form text. From the conversation, the need for vocabulary data was also an issue. But as we all know that will be a while. Back to the original question, I am in agreement with you that Patient centric data is useful. Acceptance is a cultural issue of the field.

    Jeff Brandt

  7. […] with Google yesterday we mentioned this issue and Google stated that they are hoping the VA/CMS Blue Button initiative will take hold and provide a new mechanism by which consumers retrieve their healthcare data and […]

  8. Dave Kirby says:

    In concept, Blue Button would make the business of gathering clinically created data practical for patients.
    This would allow for a number of useful apps to be deployed that would help patients manage their health.
    At least two other things need to be in place to complete the data sharing arrangements, in my opinion :

    1) There needs to be another button initiative (let’s say the Green Button Initiaitve) that would allow providers to obtain the data from consumer-controlled repositories (e.g. Healthvault, Google Health). This would be a much easier approach that the current vogue of trying to move data among providers – which requries making compelling value propositions to skeptical providers while avoiding breaking ever more strick third-party disclosure laws/regs in the process. A daunting challenge.

    2) Digitally signing the data that originates in a medical setting so that the eventual provider recipient will know that the data has not been altered by the patient. This won’t solve the problem of patients withholding data entirely, but this problem is not a new one for providers. It happens in their “paper” practices now.

    So, here is hoping that these other two factors are addressed.

  9. ShMarker says:

    Feds Set Example for Data Portability…

    Thank you for submitting this cool story – Trackback from ShMarker…

  10. […] is the Blue Button initiative that was developed by the VA and CMS. This simple concept allows one to easily download their […]

  11. […] is the Blue Button initiative that was developed by the VA and CMS. This simple concept allows one to easily download their […]

  12. […] finest contributions to promoting patient engagement – the Blue Button. The Blue Button was first released in 2010 by the VA to allow veterans to gain access and control of their personal health information (PHI). […]

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