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1/ Federal health agencies just released the long-awaited rules that could represent a huge step forward in data sharing to patient, between hospitals and between different types of electronic medical record systems.

This will shape the health data landscape for the next decade.
2/ this @WSJ article by @annawmathews and @_melaevans captures the opportunities-and controversies- well.

During my time in the federal government (2009-2014) we pushed hard on adoption of electronic health records, and adoption rose rapidly
wsj.com/articles/embar…
3/ Doctors who remember trying to find a lost paper chart (or waiting for it to come back from radiology) will concede that there is an advantage to switching from paper to digital.

And nurses and pharmacists (and patients) appreciate not having to try to read our handwriting.
4/ But the goal was not just creating digital data- it was to embrace this opportunity to rewire ineffective and sometimes dangerous healthcare processes.

So we set requirements for "meaningful use" & EHR certification, with lots of public engagement, that tried to do a lot
5/ in retrospect, we tried to do too much.

This was seen as a unique opportunity to improve broken healthcare system

Every constituency has their priorities, and in committee, it's easy to get to a list of requirements which seem "individually rational, collectively insane"
6/ Which goal do you take off?

*Quality improvement to save lives (eg BP control)?
*Immunizations?
*Electronic prescribing?
*Medication safety?
*Reporting to public health? (C/f #COVID19)
*Sharing data between doctors?
*Patient access to their records?

We tried to stage it all
7/ and we got some huge wins that I am proud of.

Hospitals are much safer places to be now than they were a decade ago

The digital data revolution has accelerated all sorts of clinical research, and is set to explode in utility with machine learning

There's more data sharing
8/ But these gains haven't matched our expectations

I've thought a lot about why.
*"Regulatory Compliance"<<<Business model
*Business rewards volume not quality, hoarding not sharing
*The medical record became a tool for "management" to control staff
newyorker.com/magazine/2018/…
9/ There has also been a constant tension on managing the speed of change-

Between acquiescing to the capabilities and ability to change for the status quo incumbents, vs the risk of pushing the system faster than it can go, and potentially harming patients and frontline workers
10/ The people involved in this healthcare digitization effort under Republican, Democrat, and Republican administrations have had expertise, have tried to listen and learn, have tried to do the right thing under uncertainty, to mixed results

This could be a turning point
11/ On the thorniest issues, we waited for the industry to reform itself

Allowing reporting of safety events
Allowing third party apps to access "walled gardens"
Allowing patients access to their health data
Allowing community physicians awareness of their pts hospitalizations
12/ I am both sad and proud when I listen to myself doing a dramatic reading of regulations back in 2012 when we stepped back from forcing EHR vendors to open up their "walled gardens" based on near-unanimous feedback that industry just couldn't do it.

blogs.gartner.com/wes_rishel/201…
13/ It is gratifying to see so many of the seeds that were planted then, nurtured through so much hard *bipartisan* work and collaboration, brought to fruition.

API app ecosystem
consumer transparency
payer "blue button"
privacy enforcement
payment reform
forbes.com/sites/davechas…
14/ I threatened that if these walled gardens persisted, some future regulator would take action.

@SeemaCMS and @donrucker just followed through on that threat.

"we do not accept the promise of [a] future state as a reason to simply wait"
15/ I applaud their willingness to take bold steps to open up the current locked-in state of health information, recognizing full well the risks involved.

We will likely have to address the gaps in our current regulation of privacy pertaining to patient data.

Let's not wait.
16/ I'm going to link to other threads by smarter people than me for those who want to go deeper into each of the ways these rules will..change the rules.

@amalec on #InformationBlocking

18/ @Travis_Broome on Conditions of Participation for hospital discharge notifications

22/ @aneeshchopra on 3 policy debates
*How @HHSGov balances consumer access vs privacy
*Whether economics of FHIR APIs extended to pop-level use cases via “bulk” access
*If consumers could access all data elements without burden

"HHS delivered on all 3"

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