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.

9 replies »

  1. 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!

  2. “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.

  3. 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 of care as chosen by the patient and the physicians themselves.

  4. 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 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. The biggest part of the cost problem, as far as I can tell, relates to hospital based care and the cost of prescription drugs, especially the very expensive specialty drugs which now account for only 1% of prescriptions written but fully one-third of drug costs. Medical devices don’t come cheap either. We also lose a lot of money to fraud but much of that is in labor-intensive areas like home health care, physical therapy and skilled nursing facilities.

    Unfortunately, I think unreasonable patient expectations are a significant contributor to the healthcare cost problem. They’re at least partly responsible for much of the defensive medicine in the system and largely responsible for much of the marginally useful, at best, and even futile end of life care. Fix those two areas and do a better job of mitigating fraud and it would free up a lot of money for doctors and NP’ to use scribes to handle most of the electronic record data entry for them.

    Prescription drugs may actually lend themselves pretty well to value based payment models which we are starting to see more of. Alternatively, payers might become more willing to simply refuse to cover drugs that are deemed to cost too much for the benefit they provide.

  5. 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 increases the weight of the athlete and adds more friction to the bicycle+athlete unit.

    A casual consideration of this mechanism may have a little humor in it, but what is happening is not funny and could cause a lethal terminal disaster ….if we cannot break this spiral in some way. We could easily arrive at a point where costs and prices are simply so high that the system stops

  6. 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 all backslap each other about putting providers on EHRs, but has it saved any money, improved care,patient safety, security, satisfaction from patients or providers? I think its been a total failure. Saved money- no way, they are $35 billion in the hole already not counting the massive losses at practices and hospitals, improved care- no studies at all that are not industry sponsored- no, safety- we just read about the 3rd leading cause of death- nope, security-hahahaha-so bad its not worth discussing, satisfaction- no way from patient side, has nearly decimated the provider world. Unfortunately, its only going to get worse, until there is a full blown crisis, which is looming right around the corner. The problem is that Congress and US gov/CMS/ONC cannot let go of fancy unproven terms like Shared savings,ACO, APM, Value based care, etc. Everyone blathers on about cannot stay of same path, etc, but that same path probably would have been less expensive, a proper relationship with EHR vendors and providers, supplying us with tools we need to provide better, less expensive care, and from the bottom up had let the market work for woven in standards. I know its hard for CMS and ONC to look back and say we blew it, but they did. Anyone with an ounce of actual EHR database experience can and still sees that this path they are on is doomed and was from the beginning. They have some sweet, smarmy, lovely people at ONC and CMS, that just do not get it. The VAST majority of physicians do the right thing by their patients everyday, and are always looking to improve care/outcomes/lower cost. CMS and ONC with their highly complex regulatory schemes for EHR, data collection, practice ideals, etc, have thrown a huge wrench in our abilities to work with technology vendors to make it work for us. Is sad, and I know that there will be non front line providers that will want to hammer me with unsustainable path we are on, etc, but just wait, the doomed path got a lot shorter with all this CMS/ONC regulation and now MACRA. So all the contrarians out there that are going to comment me back, tell me how did MU, PQRS, VBM, improve care, save money, improve satisfaction of patients/providers, improve safety, improve security, and interoperability, riddle me that. Its been 6 years…why are we not basking in the glow of Stage 3 MU right now?

  7. 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 (go ahead, write it out for yourself).