Ten years ago I contributed to launching HEART, a health IT standards effort at the OpenID Foundation. HEART stands for Health Relationship Trust, and I served as its co-chair along with Debbie Bucci, then of the US Health and Human Services Office of the National Coordinator (HHS ONC).
(What’s an ambient scribe? Read on.)
In my recent post on UMA, you might have noticed that it has lots of healthcare-related implementations. Most of them implemented its HEART profile as well.
Health providers, payers, and regulators — not to mention tech-savvy physicians and patients — have long expressed interest in enabling what we in HEART called Alice-to-Dr. Erica health data sharing. (You can read more about this use case in a white paper published by the UMA group.)
And the HEART effort allowed me to influence a variety of related programs, standards, and US government initiatives, including advising Move Health Data Forward applicants and providing testimony to the HHS ONC’s API Privacy and Security Task Force.
But despite a long-term emphasis on patient centricity, healthcare’s ecosystems have seen less progress than you’d think. Even well-resourced efforts like SMART on FHIR have had difficulty getting going.
But that’s not to dismiss new and exciting efforts under way.
The US Centers for Medicare & Medicaid Services (CMS) video I shared a couple of weeks back teased a forthcoming announcement, which is now out: CMS has launched a health technology ecosystem effort.
The agency has made lots of juicy details available. From its interop framework page:
V. Identity, Security & Trust
…
Enforces access control and consent policy appropriate to the data access context.
Provides verifiable logs or audit records for identity/auth requests and responses for independent review.
CMS calls for FHIR API implementation and interop, sets requirements for consent, and has a patient-empowering outlook. All of this is familiar from previous efforts over the last decade-plus. However, an RFI summary analysis shows that existing tech — and there’s plenty of it — is just not reaching most patients.
Patients & Family Caregivers
Primary Concerns:
The overwhelming burden of managing dozens of logins ("portalitis"); being the "human fax machine" between uncommunicative providers; the emotional trauma of repeatedly recounting complex medical histories; data being "digitally shredded" or lost when changing providers; inability to access complete records (especially images and notes) for safety, second opinions, or disability applications.
So, given that the purpose of a system is what it does, I think it’s reasonable to ask: What conditions have kept progress at bay previously? Are they still in place? How can we change those conditions?
I’m eagerly awaiting news on this front, and am tracking efforts such as Best Choice Medicine (a broadening of Right to Try laws to take advantage of modern-day precision medicine) and proposed legislation to speed up biotech innovation.
Working with doctors and other subject matter experts in the HEART context, the biggest inhibitors I saw were:
Risk sensitivity: A risk-averse culture — reasonable when “do no harm” is the highest principle! — pervades healthcare, magnified by an onerous legal liability factor.
Market signal confusion: The US’s third-party-payer model has emphasized cost management and deemphasized “customer service”. It’s said about Facebook that if you’re not the paying customer, you’re the product. I’ve heard — and personally experienced — the same between physicians and patients.
Wide ecosystem: When there are many sources and recipients of data, getting a view of the whole thing — never mind controlling data flow — is an extra challenge. Moxie Marlinspike wrote about why (proprietary) platforms tend to win over protocols. Digitized healthcare done right requires, but struggles with, the protocol approach.
So what’s new in this picture?
First, an acknowledgment of the promise of AI. From CMS’s ecosystem categories page:
Conversational AI Assistants
Objective: Use AI-powered assistants to deliver personalized, context-aware guidance to patients by securely accessing and interpreting their medical history in real time.
People are already experimenting in this direction, with abandon or even desperation. Amy Gleason’s video relayed her daughter’s experience generating AI insights by uploading all of her health records, transforming a difficult situation into new successes.
At the same time, AI ambient scribe tools have sprung up that assist with clinical documentation, letting the doctor spend more time directly with the patient vs. hunched over a computer. Health record system behemoth EPIC just announced that it’s planning to add its own ambient scribe features. I can foresee AI agents coordinating data exchange and analysis between patient and doctor.
What else is new? An exploration of the opportunities with digital credentials. The CMS RFI section about preventing “information blocking” (interference with health data flow) intends to include decentralized verifiable credentials along with traditional identity verification:
a. What are the challenges today in getting patients/caregivers to sign up and use digital identity credentials?
b. What could be the benefits to patients/caregivers if digital identity credentials were more widely used?
c. What are the potential downsides?
Despite past challenges, I love seeing the energy in CMS’s new initiative. Many tech giants have come to the table voluntarily, and they’re in a position to affect outcomes quickly.
I’ll be keeping a close eye on them all. It seems the time is ripe; just yesterday I even heard about a new HEART-related project gearing up in Canada. My fervent wish is for CMS to evolve health regulations to unlock modern health tech, and ensure true openness in connecting participants of any size to these health data ecosystems…including individual patients and providers.
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