There were times when I thought this event felt more like a channeling of a Health 2.0 event with the clarion call of “Give me my damn data” being chanted. At times like that I had to pinch myself to remember, no, I’m in the grand hall of the Hubert Humphrey Building. Of course the multiple, large portraits of past HHS Secretaries hanging from the walls was also a clear reminder of exactly where I was.
But despite some shortcomings, the event was focused around what may be the government’s (VA & CMS) 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). CMS later released their own version of Blue Button that allowed beneficiaries access to their claims data. The VA thought Blue Button would be a success if they saw 25K Vets use this capability. The VA passed that number long ago and now, two short years later, the doors have literally been blown off that original estimate with some one million patients now using Blue Button to gain access and control of their PHI.
That is a phenomenal rate of adoption especially when one considers what they actually have access to.
A Blue Button download does not give one a well formatted easy to read file of their PHI. No a Blue Button download is nothing more than a simple ASCII text file and when you look at such a file dump, it isn’t pretty. Thankfully, ASCII has been around since we were hunting the great wooly mammoth during the ice ages so just about any piece of software (e.g., legacy EHRs and claims data bases) can easily create an ASCII file and developers can likewise take an ASCII file and repurpose that text into something fairly legible.
One company doing just that is Humetrix who I first met at the HDI Forum in June. They were also present at this event where they gave me a quick demo of their latest version of iBlueButton – a nice piece of mHealth software that takes the ASCII file from a Blue Button download and reformats it into a very easy to read and decipher file that a consumer can share with their care team. There is even an iPad version designed specifically for physicians, which gets to my next point.
Whenever I am in the company of physicians, I often ask them how they are coping with the changes taking place and specifically adoption of HIT. Had one such conversation Sunday while I was doing the charity Jimmy Fund Marathon walk for cancer research. On this walk there are always quite a few oncologists and nurses and seeing as you’re walking for a good many miles, plenty of time to talk.
I asked one oncologist about HIT adoption at Dana Farber and meaningful use to which he quickly replied: “Meaningful use is the bane of our existence right now.” So I asked further: What problem could HIT really solve for him? He had a ready answer: “Rather than a new patient showing up with a mound of paper records that I must laboriously review, I want a digital version of a new patient’s record with labs, pathology, images, meds, etc. all readily laid out so I can make a more rapid assessment to define a treatment plan for that patient.”
Now we could wait until all the HIEs are in place, all DURSAs are signed resulting in frictionless data flows between healthcare institutions. We could wait until every certified EHR for Stage Two is deployed and physicians start using Direct messaging. We could also wait for patients to request under Stage Two that their provider transmit records to another (still not sure how complete those records need to be to meet Stage Two). Or we could enable Blue Button, educate the public and let them take direct control of their PHI and share it with whom they see fit. Plenty of options but if we really want to change healthcare, the last one is the most impactful, the most viable, but unfortunately like the others, it will take some time, though likely less than getting those DURSAs signed.
Getting back to yesterday’s event and my disappointment, following is what I would like to see in the future:
Honest and frank discussion on giving patients access to their records. The American Hospital Association was in vehement opposition to the Stage Two rules on patient access to their records. Let’s put them on stage to explain why, to give that contrarian viewpoint, to provide balance.
Enlist providers to discuss the benefits and challenges of giving patients access to their records. How does patient access to records change the conversation of care? How does it impact the workflow of a practice? What fears may physicians have and how do we address them?
Fewer panels of talking heads and more real world perspectives. The event had a wonderful moment when a Vietnam veteran talk about his healthcare challenges and how Blue Button contributed significantly to his self-management. Let see more of that, e.g. a Medicare patient using Blue Button.
And my biggest disappointment of all had nothing to do with this event – it had to do with Stage Two.
If indeed the feds really believe in the Blue Button the same way they believe in Direct then why the h*ll did they not directly put it into the certification criteria for EHRs. Clearly something went amiss and it is unfortunate.
Thankfully, many vendors have stated they will support Blue Button in a forthcoming release including Allscripts, athenahealth, Cerner, Greenway, and many others. Our last HIE report also found just over 25% of vendors profiled intend to support Blue Button in 2012. There is momentum here already, now we just need to on-board physicians to talk to their patients about the value of having access to and control of their PHI for as we move to more capitated models of care, the engaged patient may indeed be the miracle drug to rescue our healthcare system from financial collapse.
Addendum: Have received feedback regarding Stage Two and patient access to their records so let me clarify. Stage Two does indeed grant a patient the ability to access, view and transmit their records. This is incredibly powerful, especially with the push towards standards and the transmitted file being in a CDA standard format. As Keith Boone so clearly articulates, the content package that is transmitted under Stage Two is a fairly complete, summary document of care received and an individual’s health status. But Stage Two does not support an ability to transmit a full and complete longitudinal record. It is my understanding that the Blue Button, at least the instance at the VA, allows a patient to download their complete record thus why I took the argument down the path I did.
In time it is my hope that the Blue Button becomes a symbol, as Keith puts it, “a verb,” that all will understand instinctively – click this, get your data and move on. Other services will take that data dump, transpose it the way you want it for the purposes you intend. The technology and standards behind it will simply become irrelevant to the user. It just works. Getting there will be the task of the S&I Framework workgroups. I wish them God’s speed in accomplishing that task for the benefit of all citizens.
Many in both the private and public sectors are working hard on that vision – keep up the good work!
Hi John,
The answer for your oncologist-friend is the MedKaz® (see medkaz.com), not the Blue Button. Clearly, the Blue Button is a step in the right direction but it includes only limited summary info, not complete progress notes, etc.
As I’ve told you before, the MedKaz a unique, patented medical record system designed for patients that enables doctors to deliver better quality, lower-cost care.
It’s a distinctive flash drive that contains a patient’s complete medical record from all their providers. The patient owns and controls it and carries it on their key chain, in their wallet, or wears it. It is HIPAA compliant, encrypted, and password-controlled. The patient gives it to their physician when they need care—in or out of their network, at home or away. The physician updates after a visit.
By making a patient’s complete medical record available to his or her care providers at the point of care, it enables providers to avoid costly medical mistakes, coordinate their patient’s care and preclude unnecessary or redundant tests. These savings translate into lower healthcare costs for their employer or insurer.
Several hundred patients have tested the MedKaz. It’s easy to learn and use, its technology is proven, it’s financially self-sustaining, and its unique business model aligns the interests of patients and providers. Most importantly, it benefits and meets the disparate needs of everyone in the healthcare equation: patients, providers, employers, insurers and government.
Given your frustration, John, and the frustration of so many others at the inability of doctors to share records and patients’ inability to participate in their are decisions, I should think you’d welcome an innovative product like the MedKaz! 🙂
Thanks for your comment Merle but as I have stated many times before, few healthcare organizations are going to let a patient show up for a visit and allow them to stick their USB thumb-drive into the network. It’s a non-starter.
Interesting conclusion, John. But that’s not been our experience. We’ve only run into one hospital that has refused to allow an USB device to be plugged into their system — and we have a workaround for them. All the others — including two major teaching hospitals — haven’t hesitated at all. Guess we’ll just have to wait and see what happens as more and more patients an doctors embrace the MedKaz.
Interesting that you get this type of comment as well. I have someone who has sent me essentially the same pitch (albeit a different company). I’m not sold on the idea. My biggest problem with it is the lazy patients (I speak as one of them).
Hello John,
I believe the feds did put Blue Button into Stage 2. It’s in the “view, download, and transmit” requirement, and it nicely combines the option of a structured download or a structured Direct message to the patient’s address of choice (such as an mHealth app or a PHR, etc.)
And with a little bit of post-stage-2 optimization (“automate the blue button”, S&I Framework) the vendors should be able to let a patient set up his or her “transmit” request(s) once and never have to worry about it again.
This opens the door to some profound changes in the way consumers can manage “their own d*** data.”
David McCallie / Cerner
Hello David,
Thank you for your thoughtful comments which have led to write an Addendum to the post. Hopefully that will clear the air as to some of my thinking and why I ended up where I did with a few statements.
I did sit in on a session where the discussion focused on the future work of the S&I framework to automate Blue Button. Lots of promise there and look forward to further advances that as you so rightly put it…
…opens the door to some profound changes…
With the lapse of the Governance RFI, HHS has missed an opportunity to assert the patient’s right to their own data. They seem to be promising strong guidance on how to apply existing regulations as a substitute. Let’s hope they come through because without it, Blue Button and Direct will not be able to achieve the full potential of patient engagement.
Adrian
John,
I will forgive your oversight that SOAPware was not listed as in the vendors supporting the Blue Button initiative, even though we were the first one to commit. I’m thrilled to see the others coming on board. I suspect all of us will want to get to a common, structured format ASAP.
Randall Oates, M.D.
Do you think we’ll reach a common structured format soon? It will be nice to have all these EHR vendors with blue buttons, but if each one downloads into a format that it unusable by other vendors it won’t make much sense.
The Beacon community is putting a lot of work into constraining the C83 CCD elements into something that can provide useful exchange of structured data across multiple EHR vendors. I would be most interested in learning of other’s perspectives as to whether this might become commonly supported as a starting point? This will likely have some fairly wide implementation as early as next month.
According to those I have spoken with, there is the move to a standard structured format, ala CDA in Stage 2 that Keith talks about in his post. THat should suffice.
Thanks for your forgiveness Randall and being the trail blazer that you are, at least you can take comfort in seeing others following your lead. Now if we can just get to that single common structure format that is machine, as well as human readable, we’ll really be getting somewhere!
I thought the Blue Button a simple way for the patient to access their record in a readable format.
The conversation on Blue Button has shifted to include transferring of other data beyond the patient. Why do we need it to transfer medical records or claims information when we have Direct, Exchange, RHex for clinical info and X12N for administrative info. Are we saying those do not work for their use cases? It sounds like too many choices.
@Marty, the Blue Button has become transformed into a set of related options called “view, download, or transmit.” These options give the consumer a reasonable set of choices. The “view” choice allows for simple on-line browsing via an EHR portal web page. The “download” option allows for a “traditional” textual Blue Button copy, or for a structured download (CCDA.) And the “transmit” option allows the consumer to request that the copy be sent securely to a designated target service (PHR, another MD, etc.) relieving the consumer of the need to manage PHI on their local PC (and making it easier for downstream providers to trust the authenticity of the data.)
I think all three of these use-cases make sense. I’m glad that ONC/CMS left this as a consumer-choice item, so that evolving markets can select the best approaches.
David McCallie / Cerner
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