Yesterday, I was in Washington DC to attend ONC’s Consumer Health IT Summit. While having high hopes for some breathtaking new developments, ultimately walked away disappointed as this event ultimately devolved into a Blue Button promotional event. Now I have nothing wrong with some promotion, after all my background is heavily steeped in marketing. What I do have a problem with, as an analyst, is major hype around any concept, technology, etc. that is not balanced with some serious, thoughtful critique.
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!