Dave, you’re spot on. I’m not sure what’s happened to Dan lately, either. But, he’s definitely not the same guy. PHI belongs to the person, not the corporation, whether hospital or big tech. For without the patient, there is no data.

So many of these discussions fall into two thematic categories:
1. Look how articulate and sophisticated we are in describing the problems, aren’t we smart/enlightened/exemplary humans?

-OR-

2. Let’s do X! Aren’t we smart/enlightened/exemplary humans? (No practical means, methods, resources, measures, metrics offered, indicated.)

I know some of the folks who’ve posted here better than others. Some have developed, implemented, measured, shared work that has moved some small piece an inch or two.

What we all have in common is the belief that posting to threads like this matter. It doesn’t unless it shifts to a plan that includes objectives, measurement, metrics, and timelines towards a defined “better”. As others have deconstructed one prior poster or another, I could also deconstruct one or more of the arguments. For example, the proposition that the government hasn’t facilitated uniform data Standards is partially false. A substantial fraction of the truth of that statement is a result of successful lobbying, project undermining, obfuscation, and etc. by the major vendors for which they’ve gotten a walk and achieved systematic reduction in oversight and enforcement. No government action in part results from its benefit to key stakeholders, including the major vendors thus protected from competition. The two channels are hardly independent.

All that is to demonstrate that we can go on all day on theme 1 or 2 as we have for 20+ years.

My rhetorical question is this: On what basis can we reasonably assume vendors would act any different than they are acting? Any enterprise is going to work very hard to persist the sale-ability of their product “as is” for as long as they can. I grew up in metro-Detroit in the 70s. The then-Big 3 convinced us that seatbelts were too expensive, crash-save cars were impossible, lower emissions too hard. It took “some other actors” to disrupt that.

Have a look at HITECH 2009 which included by reference as law ASTM 2147 with its very (VERY) modest requirements for audit functions for EHR systems that are absurdly (or worse) “light”. Yet no entity enforces that law. Is this an accident? Is the non-enforcement a decision made in the absence of any input from the vendor community? Unlikely. Read the published settlements for vendor cheating on “Certification”, which resulted not in a tighter regime for “Meaningful Use’s” even more nanoscale requirements than 2147. It resulted in (cue the laugh track here)”self-attestation”.

In the meantime we collectively ignore that the historical guardians of patient interest have been systematically taken off line. FDA oversight has been eliminated, then forbidden. Consumer protection arm of FTC has to cooperate with ONC (which has no mission, mandate, or enforcement power, best seen as a thematic category 1 enterprise as above). Law enforcement? Some time back I calculated the fractional percent of anti-fraud spending compared to Federal healthcare spending. As of 2018 or so, it was about 0.2%, and their return on investment always meets or exceeds 3 to 1. It is amazing what they can accomplish with throttled funding. Why doesn’t that spending go up?

The collective efforts and minds on this thread so far could write on and on for weeks, months, years on the attributes of “bad”. What we all overlook is that in the midst of all this, as we point only to bad, those who thrive from badness win. They win because we do nothing to swing the spotlight from the bad towards those examples, those enterprises who have already demonstrated success. Some personal favorites: The Anesthesiology profession transformed itself in the late 90s from high-risk, high error, high malpractice rates to successful normalization of data modeling based on critical attributes of care. In the years following errors, harms and medmal costs fell. There’s an HIV clinic in Birmingham Alabama that, by also normalizing their data models long ago, has achieved extraordinary success and continued to build on it. Their HIV positive population is now indistinguishable from age/risk matched non-HIV patients. Let’s package their secret sauce for success.

Themes 1 and 2 above point to a funny metaphor I recently heard.

“Why, in the fish markets, are there usually no lids on the crab containers? Because if one crab makes progress, the others promptly pull it back down”. Let’s dedicate ourselves to quit being crabs.

There is a small group I know of that is attempting to wean itself from celebrating their ability to describe bad and shift to work on practical measurable, real patient benefit projects no matter how small the achievable scale. No doubt there are other such groups. The success stories I know of are greatly facilitated by data model normalization and they did not wait for the government to do anything. They saw the necessity and the value and did it as a tool to facilitate “better” not an objective for its own sake.

Our brethren in Anesthesiology demonstrated the government isn’t required to do that. The UAlabama Birmingham 1812 Clinic continuously demonstrates the government isn’t required.

I have no doubt that our little “action, not noise” group is one of many who don’t bother with complaints any more or with “Let’s do X” declarations with zero “How”. If you happen to be on one of those islands, or looking for such a community of problem-solvers with actual measurable achievements in patient benefit, consider dropping me a note at R.Gelzer@TrustworthyEHR.com. Let’s connect on shifting the US narrative from “Isn’t this awful” to “Let’s support, join, replicate and expand successes that already exist.” The government can’t help, its too compromised, until we collectively drag them away from perverse incentives for inaction with, “…and here’s how it is already being done, despite all those who say it can’t be done”.

Advocacy is OK and necessary to mitigate harms near-term.
Solutions are required and, absent a “how”, no matter how good it sounds, it isn’t a solution.
Let’s unite alongside those who have a proven how and make that our home community.

RDGelzer

Priority #1 = access to my health data.
Priority #2 = my privacy.

And *I* decide the level of privacy I want. Not software vendors. Not hospitals.

Judy: the day your child is seriously sick and you don’t have access to data, you will understand and be sorry.

What most people and unfortunately even most patient advocates don’t realize is that in our wasteful money-focused healthcare system, even the lobby that claims to represent patients, CARIN Alliance, is working hard to block patient and physician control over health records. They’re doing it for the same reason as Faulkner and her customers: the profit to be made from control of the patient data and the work product of the licensed clinicians. The CARIN lobby, like the EHR lobby, and the hospital lobby, want to make sure that they are paid to “protect” the patients and the doctor-patient transactions because neither patients nor the physicians patients choose can be trusted to control our own interactions. We need very expensive gatekeepers in the form of hospitals and consumer app platforms – and they *should* be mandated by law.

The EHR lobby and the CARIN platform lobby have many things in common. They both organize in secret as lobbies and then engage in public relations to sell their “code of conduct” and their “best practices” to regulators and lawmakers. They both then seek to be mandated by government as middlemen in the transactions among doctors and between patients and doctors. Within HIPAA (hospitals) or outside HIPAA jurisdiction (PHRs and consumer app platforms), both kinds of data brokers want government to mandate that health records that derive from the physician-patient relationship MUST go through a data broker that can see and profit from the data.

Neither HIPAA nor any other law requires the physician-patient relationship, and the health records that result from medical practice, to be mediated by an intermediary that can access and profit from the data. Before computers, the health records intermediaries in the practice of medicine were US Postal Service and Fax. These intermediaries did not have access and could not monetize the immense value of the medical record data. The USPS is not allowed to open the mail and analog Faxes could not be profitably stored and repurposed by AT&T even if it were allowed by law.

But once the physician-patient relationship is digitized and interfaces called APIs are introduced, the ability to profit based on the contents of the envelope or fax line becomes virtually unlimited. In 2020, computers, storage, and networking are effectively free relative to the value of the health records for machine learning, artificial intelligence, analytics, health insurance, and a long list of ways to profit by steering or locking-in patients and physicians into various “networks”.

As Grace points out, patients do not have a lobby. Our physicians (and our regulators) have been manipulated over decades of “managed care” to create a vast bureaucracy of middlemen where administrators have grown 3,200% over a time-period where physician numbers have grown only 150%. That’s about 25X the rate of growth of middlemen and managers over actual producers. (I don’t mean to exclude nurses, and PAs, and other clinicians as actual producers. All clinicians are are valuable and teams that operate outside of “managed care” and vastly consolidated hospital networks do not contribute to the administrative bloat that has US wasting $1Trillion / year.)

It’s time for patients as well as clinicians to organize to take back medicine. Only then will we have a lobby of our own.

Dan, what the heck has happened to you? This screed seems to be completely off target.

Who said anything wrong here about HIPAA? The “legal loophole” Grace cites is that so many hospital companies who are selling data access to tech are saying this is all fine because it’s just HIPAA-allowed BAA stuff; she’s decrying all the players’ lack of concern for *the individual’s* wants. You know, the person for whom the industry exists. The person for whose benefit the hospital is in business, and thus for whose benefit Epic et al exist.

I don’t know who decided to call it “information blocking” but I do know (as you do) that it’s too damned hard for people in need to get their data.

As I read it, Grace only blames Faulkner for having for years been useless at helping people in need get their data [because, as she has said, she only does what her customers tell her they want], and for being grossly paternalistic about access, saying (just as one would to a two year old), “No no, honey, you don’t understand. I’ll decide that for you.” I’m sick of it.

What’s your view on how we can ensure (as a priority) the needs of the SICK PERSON? How do we do that? And while we’re at it, what do you make of all the studies and anecdotes of people who’ve tried to get their data and have face horrific and unjustifiable delays?

I know it’s human nature (the worst, I guess) that both Epic and Thompson would advocate for their parochial interests. But that’s where I think Grace hits the nail on the head when she says *crystal clear* whether or not they stand with the needs of the sick people.

Your turn, buddy…

Keep up the good work!