I have opined before, and I will doubtless opine again, about the importance of the patient and all providers having full and free access to the patient's electronic health record, the EHR, with the patient's assent, of course. Another article has now appeared, in JAMA, proposing a technical way that this could be accomplished:
The best way to effect record sharing, the article says, is to acknowledge that the record belongs to the patient, and for there to be entities called "health data managers," which would aggregate the data and distribute it. The article deals with the technicalities of how that should be done.
This is good work, but there will be many more problems getting there than the authors indicate. They probably know this, but to speak to the political-business problems would be too much of a diversion for a short article.
But you and I have no such inhibitions. Here's the letter I submitted to JAMA that speaks to the problems. I just love my term, the WEAPONIZED EHR. Doesn't that have a real ring to it?
The shared medical record was first advocated in theory in 1973, its practical desirability demonstrated in 2014, and now Mikk et al. have offered excellent and imaginative suggestions to enable widespread implementation.123
They underestimate, however, with their mild words “competitive advantage,” the opposition their reasonable proposals will face. Seeking business dominance by patient and clinician capture, the large medical centers and enterprise level software manufacturers have essentially weaponized the EHR by keeping it private and unsharable. When patient information is available only within an EHR network, the patient is “nudged” to access only in-network providers and facilities.4 Likewise, the externally impenetrable EHR pressures clinicians to renounce their independence and join the network not only to defray EHR costs, but also to achieve “featured” status for referrals on the EHR as the networks “nudge” referrals inward, and to utilize data in treating patients that they would have only laborious access to otherwise.
Maintaining strong EHR boundaries for network commercial advantage is regrettable. If large networks are to achieve dominance, they should do so by lowering costs and raising quality, which has been difficult for them, rather than using the EHR as a cudgel.5 Closed networks and closed EHRs provide diminished incentives to improve efficiency and quality, as services need to be just “good enough” rather than truly excellent to attract captured patients. A closed system even presents an ethical problem, since the primary care provider, who is ethically bound as a medical fiduciary to seek the best and most efficient referral resource for the patient, is nudged by the system to respect instead the financial needs of the network.
Even high-minded networks will feel forced to isolate their EHRs if “everyone else” is doing it. Government needs to help them do the right thing by setting EHR ground rules for business competition that redound to the benefit of the public. Public policy should thus mandate the authors' proposals so that patients have full and free access to their records. In addition, EHRs should be fully interoperable as soon as possible, choice of referral resources should be on a level playing field, and in-network and out-of-network practices should have equal financial access to EHRs. The EHR should promote full and fair competition rather than impede it. Clearly, it is political and economic forces rather than technical difficulties that are the barrier.
1 Shenkin BN, Warner DC: Giving the Patient His Medical Record: A Proposal to Improve the System. NEJM 1973;289:688-692.
2 Walker J, et al. The Road toward Fully Transparent Medical Records. NEJM 2014;370:6-8
3 Mikk KA, Sleeper HA, Topol EJ. The Pathway to Patient Data Ownership and Better Health. JAMA. 2017;318:1433-1434.
4 Thaler RH, Sunstein CR. Nudge: Improving Decisions About Health, Wealth, and Happiness. New Haven: Yale University Press; 2008.
5 Berenson RA: A Physician’s Perspective on Vertical Integration. Health Affairs 2017;36:1585-1590.
OK, all well and good. But let's get to the personal side of it. Me.
You all know the thrill of discovery, which is what I experienced when I saw patient and clinician capture being practiced by these large institutions. I knew, however, deep down, that I couldn't be the only one to see this, particularly since I don't follow the EHR literature at all. And sure enough, last week I ran into a guy who knows a lot more about this than I do, Richard Frank, who is professor at the Department of Health Care Policy at Harvard Medical School. I shared my discovery with him. He was very nice and kind as he told me, oh yes, we call that "information blocking," and I served on a board for the ONC (Office of the National Coordinator for Health Information Technology) that reported on that. Here's the report:
So, there it is. Citing "anecdotal evidence," the report says: "A common charge is that some hospitals or health systems engage in information blocking to control referrals and enhance their market dominance." And, "the developer and provider may implement this capability so as to restrict the exchange of information to physicians who are members of the provider’s care network."
So, there it is, what I am so impassioned about is, well, well-known and well-recognized. My letter will not be published, and I will sink back into my well-deserved obscurity as a well-meaning, not to be too kind about it, rube.
What do I say to myself when I find out what a rube I've been, and how I could feel embarrassed when I think about how others might see me? I say, along with Hyman Roth, when he reflects on how Moe Green was taken out, "This is the life we have chosen." I have chosen to be a big-mouth and be out there -- or maybe I haven't chosen, maybe that's just the way I am. There are pluses and there are minuses, and one minus is the constant threat of embarrassment and failure for all to see. If I'm not going to adjust and be very careful, and look before I leap, I'll just have to learn to live with it. Which is hard, because I can easily berate myself and find fault with myself and have to talk to myself and say, hey, there are pluses along with the minuses, and "this is the life that I have chosen." And remember that even if I learn sometimes painfully publicly, at least I do learn, and in the end I hope that I become wiser.
And meanwhile, who knows, maybe they'll publish the letter, and even if I'm not the first to see who is doing what and to call them out, maybe I'll be one of those pounding on the nail into the board until the deed is done, and the feds makes rules that work for people and not large monopolistic institutions who use force, who are bullies, who I have always resented and disliked because of the way I was brought up, to identify with the oppressed, because that's who my ancestors were, the oppressed.