President-Elect Trump recently announced: “for every one new regulation, two old regulations must be eliminated.” Regulatory capture, the topic of a recent THCB post by Nortin Hadler, has enabled many regulations based on HITECH that restrict competition by allowing information blocking. Many other regulations around quality measures, documentation, decision support, contract transparency, and kickback safe harbors are now needed to counteract EHR vendor consolidation through regulatory capture.
One regulation designed to establish a patient-controlled interface (a patient-controlled API) to health records will enable competition for all aspects of the institutional EHR by decentralizing access to the patient information. The impact on health reform, ACA reform, and medical research would be immense.
“Give me the place to stand, and I shall move the earth.” If Archimedes were moving healthcare practices and politics then data would be his lever. The data to move healthcare is much more than a hospital’s EHR will ever be trusted with. It includes the social determinants of health, it includes employment and exposure, it includes your genome and family, it includes personal beliefs.
The data to move healthcare practices and politics does not split cleanly between research and clinical uses. Sync for Science is not enough to provide independent decision support at the point of care. Access to detailed personal data spanning the full range of human experience and aggregated over a lifetime is now technologically possible. Who can be trusted with this formidable power?
Nobody but ourselves. Regardless of how well-regulated and well-organized our healthcare and government institutions might be (need we review the cybersecurity track record of either hospitals or government?), the only one to be trusted with knowing everything about me is me.
The world is full of institutions and people that know something about me. Some, I know about. The vast majority are hidden data brokers. Surescripts, Acxiom, Lexis-Nexis, Optum, IMS, All Payer Claims Database, and Prescription Drug Monitoring Programs are all collecting and selling as much about me as they can. It’s their only business and I am the product. Even as the patient surveillance industry has boomed along with my out-of-pocket costs, transparency of health care quality or cost is as elusive as ever.
As Doc Searls recently commented: “Economically speaking, the American health care system is not built for patients, because patients aren’t the ones paying for it directly. Insurance companies are.” This well-known technology journalist speaks in favor patient-centered health records.
Technology now makes it possible for each of us to control more and better data than the hospitals and data brokers. That means each of us as patients would have more leverage to move health care and health insurance practices. Instead of buying our information from hospitals and data brokers, our providers, researchers, and regulators would be getting the information by asking us. By asking us.
Which leaves one major contingency: Who would pay to give us patients the ability to control our own health records? A less regulated, more market-driven health system is now technically possible but it requires investment and a sustainability plan. In the long run, patients facing many thousands of dollars in out-of-pocket expenses will see the wisdom of spending a few hundred to inform their spending. More immediately, and aligned with whatever policies a Trump administration brings to health and human services, we might see pharmaceutical companies, insurance companies, and public institutions – anyone that would benefit from better access to patient records in a value-based payment system – invest in patient-centered health records. It all starts with one well-designed regulation to replace information blocking with “Just ask me”.
Adrian Gropper is Chief Privacy Officer of the Privacy Rights Foundation.
Categories: Uncategorized
The goal of patient-centered health records is exactly as far away as physicians will have it. Physicians are the prescribers (and therefore control the money) and they bear the liability associated with patient care. As technology becomes an ever larger part of healthcare, physicians have a choice to continue to allow others to control their essential tools or to take control of the tech-enhanced patient relationship.
EHRs control the physician-patient relationship only to the extent that 7 years of HITECH government meddling have handed them that role. It’s an unsustainable position because EHRs are naturally just a commodity serving the same role in the US as they do in other countries’ health systems. There’s no reason for any EHR serving a diverse population of 10 Million people to be different from any other EHR serving 10 Million people. athenahealth certainly demonstrates this as a centralized technology model.
But technology and networking continue to evolve beyond the centralized athenahealth or UK NHS model. India has overtaken the US as the largest smartphone market. Patients and doctors can now own enough technology to operate their own full-featured EHR – as demonstrated by our HIE of One project https://en.wikipedia.org/wiki/HIE_of_One
I don’t know how long it will take for physicians and other licensed practitioners to realize that they can keep control of their professional tools but the cost of innovating in the centralized model of the EHR will continue to frustrate physicians as well as patients.
Your goal is ideal, Adrian, but far away, and rather tricky to achieve because some of the intellectual property on the EHR is going to be interpreted as being copyrighted. Like the interpretation of an ejection fraction from the raw data of an echocardiogram. Or, just the doc’s diagnosis. And also, the issue of who has the legal right to change the record? Hmmm? If the patient really owns the record, he could destroy portions of it that showed contributory negligence in a disease state thus affect money transfers. Like getting rid of STD histories (“I failed to use a condom, doc”.).
Third parties are going to fight this vigorously….but it’s a golden objective. Keep pushing. It’s many caveats might be solved.
Always liked Adrian. Merle, good to know you are still in this. What I like most about what Adrian and the rest of us have been saying is that, at the end of the day, regardless of who is in office, we the people should have access to our complete medical record, and the data within it. Like crumbs in the forest, it is the path home. Love Adrian’s “The only one to be trusted with knowing everything about me is me.” We at Zweena Health could not have said it any better. However, the real issue is that most of us have no idea, as individuals, how important this is until it is too late. The good news is that we are having conversations about some organizations investing in patient centered health records. Quietly. Slowly. And very carefully…
Adrian, welcome to my world — where the patient controls his or her own complete record from all his or her providers, carries it on a keychain, in a wallet, or wears it and gives it to any provider at the point of care. In turn, their providers can search its contents and access whatever records they need to be able to coordinate their patients’ care, avoid mistakes and deliver better, lower-cost care.
We even solve the funding issue by having the patient (or his/her insurers/employers/government) pay an annual subscription part of which is paid to providers to upload their notes, etc. to the patient’s device. (As you point out, the reason insurers or employers will ultimately pay the subscription fee is because they reap the major savings the system generates.)
In addition to ensuring providers can coordinate care, this system has three other important benefits. It empowers the patient to manage his/her care. It operates completely independent of government involvement. And it materially increases provider income (when’s the last time any system did that?).
Added benefits: it is the most secure system possible (you can’t hack the patient’s records if they aren’t available on a server or in a network), and as long as there is a charged computer available patient records can be accessed anytime, even during power outages, natural disasters and without Internet access!
How’s that for the solution you advocate — and it’s here today!
“President-Elect Trump recently announced: “for every one new regulation, two old regulations must be eliminated.”
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Which simply reflects his utter ignorance of and indifference to the way statutory federal regulation works.
From the Congressional Research Service, June 17th, 2013:
“Federal regulation, like taxing and spending, is one of the basic tools of government used to implement public policy. Although not as frequently examined as congressional or presidential policy making, the process of developing and framing rules is viewed by some as central to the definition and implementation of public policy in the United States.
Regulations generally start with an act of Congress, and are the means by which statutes are implemented and specific requirements are established…”
“…are the means by which statutes are implemented…”
Statutes tell us the “what” and the “why.” The ensuing regulations tell us the “who,” “how,” and “when.” The business analogies are the “Policies and Procedures” we all equally hate (and frequently ignore).
Moreover, I count no fewer than 17 federal laws that govern the CFR process itself.
But, I know they don’t teach Article I at the Trump® University Skool of Law.
Adrian Gropper has got it right as it relates to promoting a patient controlled interface to comprehensive health records and information. He also has correctly defined the model in medicine that is rapidly emerging when he states “The data to move healthcare is much more than a hospital’s EHR will ever be trusted with. It includes the social determinants of health, it includes employment and exposure, it includes your genome and family, it includes personal beliefs” Let us help him with his “JUST ASK ME” campaign. We have a unique opportunity right now born out of crisis to effect radical but necessary change.
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