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Independent Decision Support at the Point-of-Care for Both Patients and Physicians

flying cadeucii“We did not spend $35 Billion to create 5 data silos.” This was said by Vice President Biden at the beginning of Datapalooza on Monday and repeated by CMS’s Andy Slavitt on Tuesday. On Wednesday, at the Privacy and Security Datapalooza at HHS, I proposed a very simple definition of electronic health record (EHR) interoperability as the ability for patients and physicians to access independent decision support at the point of care regardless of what EHR system was being used.

Over the three days of Datapalooza, I talked to both advocates and officials about data blocking. In my opinion, current work on FHIR and HEART is not going to make a big dent in data blocking and would not enable independent decision support at the point of care. The reasons are:

  • Digital signatures are not supported for patient-authorized release of information directly to third parties. This would require a mechanism for the patient to register a signing key via the EHR View, Download, Transmit (VDT) portal so that from then on the EHR could accept Release of Information (ROI) requests digitally signed by the patient. Lacking this automation feature, the patient would have to sign-in to the EHR VDT portal for each ROI request that directed access to a new destination.

  • There is no provision for the EHR to notify or warn the patient when an ROI request is made unless the patient is signed-in to the VDT portal. HIPAA allows the patient to specify any destination for the ROI but HIPAA also allows a warning to be issued by the hospital if they don’t like the destination. Lacking a means to issue this warning in a convenient way that is specified or controlled by the patient, the scope of automation is limited and interoperability becomes less practical.

  • There is no standardized provision for notification of the patient whenever a release of information is made via the FHIR API. In finance and most of web commerce, we expect an email whenever our account is accessed externally, but HIPAA does not require, and EHR vendors do not provide, this kind of accounting for disclosures. This delays discovery of security breaches and contributes to inappropriate snooping in health systems and HIEs that now each provide access to millions of patients by tens of thousands of staff.

  • There is no provision for alerting the patient’s caregivers, AI, or medical home technology that a change has been made to her record in the EHR. This key feature of the now abandoned Blue Button Plus, has no equivalent in FHIR. This makes decision support at the point of care entirely dependent on the EHR vendor and hospital organization. Lacking this feature, an ROI request would have to be issued and re-issued blindly to check if anything has changed. EHR vendors and hospitals will be able to claim that will overload their systems and refuse to provide access for independent decision support at the point of care.

Any one of these four missing standards can be used to continue data blocking even as FHIR and HEART are released. All of these four standards would be consistent with HIPAA and the oft-cited goal of interoperability to facilitate health reform and the Precision Medicine Initiative.

Also around Datapalooza, CMS is promoting Blue Button on FHIR and ONC announced the first initiatives that involve both FHIR and HEART. They say: “The goal of this Challenge is to incentivize participants to create a Solution that utilizes the HEART implementation specifications to enable individuals to securely authorize the movement of their health data to destinations they choose.” … “Engaging individuals is a requirement of the Challenge. Participants are expected to engage individuals to test implementation of the Solution and enable processes that require individuals to authorize the release of their health data to a destination they choose.”

Lacking adequate standards support by FHIR and HEART, data blockers will find all sorts of excuses for their actions. They say “it’s too hard”, “too expensive”, “the standards don’t exist”, and invoke the HIPAA Security Rule. We have seen this with health information exchanges, Blue Button, Blue Button Plus, Direct messaging, and Meaningful Use View, Download, Transmit. On the current path, MACRA and the EHR regulators will not have the tools they need to promote practical interoperability and to execute on the vision of VP Biden and Andy Slavitt.

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PerryAdrian Gropper, MDBarry CarolWilliam Palmer MDmeltoots Recent comment authors
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Adrian Gropper, MD
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Adrian Gropper, MD

Spirited debate at today’s Joint HIT Meeting. https://www.healthit.gov/FACAS/calendar/2016/05/17/joint-hit-committee-meeting API Task Force recommendation finally passed 13-10. They did a great job.

Pushback was on the basis of EHRs wanting to protect patients and hoping that government would step-in and define what is a safe and righteous app. API Task Force position is that EHRs can warn the patient but cannot block.

The nice thing about Independent Decision Support at the Point of Care (#iDSpoc) is that the warning, if needed, can come directly from the physician instead of from the EHR!

William Palmer MD
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William Palmer MD

I think we are beginning to see a peculiar sort of economic spiral in health care. Just as there are death-spirals and wage-cost spirals, in health care we seem to be entering what looks like a cost–fix spiral. Costs are pushing fixit efforts and fixit efforts are pushing costs. Ideas are coming in thick and fast and almost all of these are now actually adding costs. Try to think of one that has lowered costs. ACOs, PCMHs? HMOs? PPOs?…EMRs MUs? Recall the PSRO? It is like we are trying to improve a cyclists time-trials by some weight training, but this… Read more »

Barry Carol
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Barry Carol

Is there any role for physician leadership here? I’ve heard all the complaints, especially about the burden of electronic records. My own primary care doctor told me that he thinks the introduction of EHR into his practice, which is part of an ACO, reduces his productivity as measured by the number of patients he can see each day by about 15%. Historically, my perception is that physicians viewed their role as taking care of patients to the best of their ability and trying to do the right thing for them but knowing or caring about costs wasn’t their concern. From… Read more »

Adrian Gropper, MD
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Adrian Gropper, MD

There’s a huge role for physician leadership because it’s the physicians that are writing the orders and their patients that are making most of the decisions. The problem is that there is almost no quality transparency in the system to drive the decisions of physicians or patients. And there’s no price transparency at the point-of-care either. This is why the focus needs to be on INDEPENDENT decision support at the point of care. With simple and obvious improvements in transparency proposed in this post, data will flow, without institutional blockage, to those services that can inform decisions at the point… Read more »

Perry
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Perry

“From a patient’s perspective, pure fee for service, at least potentially, creates an incentive to provide too much care while capitation and other so-called value based payment models provide an incentive to provide too little care.”

Trust me, this concerns doctors as well. Ethically, as well as the fact that I don’t think juries will look kindly on “saving money” as a reason not to do a test or treatment.

Perry
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Perry

Nah, the government will step in and save the day before that happens…

meltoots
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meltoots

Oh yes you did spend $35 billion to make isolated data silos! When will the US government, its cronies and wonks understand that making a “policy market” never works. Look at our military industrial complex, they are repeated the same problem. If they let the real market work, and guide it with small steps/nudges and standards, it works much better. MACRA will only worsen the massive failure as its just more of the same. Jamming untested, incomplete, unsafe, not ready technology onto the frontline of healthcare providers, hastily and irrationally, has set us back at least a decade. They can… Read more »

Perry
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Perry

Nailed it.

MightyCasey
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The status quo mints cash off of the status quo every day, across the healthcare system landscape. Fee For Service (FFS – which hilariously has an urban dictionary acronym meaning, which you can ask Google for) still has a stranglehold on the entire medical-industrial complex’s process chain, the system is designed/built to create silos that data flow into … and cash flows out. Data-blocking preserves a $3T/year revenue stream. How do we defeat THAT? Until that question is answered, we’ll have to admit that we need a new acronym for Working Entity Registry Functioning Under Controlled Knowledge to Enable Dataflow… Read more »