By STEPHEN FARBER
Part one argued that affected person entry was by no means the end line; it was the inspiration. That is about what we construct now that we’re standing on it.
Each good sport present has a second spherical, and the second spherical is all the time more durable. The primary spherical was about getting well being info out of the buildings that held it. Regulation, requirements, and a decade of unglamorous plumbing have introduced us to an necessary threshold. People can more and more pull data from a number of establishments into one place. The board paid out. The viewers cheered.
Then a quieter and stranger query arrives. You’re holding years of visits, laboratory outcomes, drugs, and discharge summaries, and also you understand that having your historical past in a single place just isn’t the identical as understanding it. Meeting was the primary onerous downside, but it surely was not the final.
The report is lastly readable
That is the place synthetic intelligence walks onto the stage, and the promise is actual. Few clinicians have time to learn a affected person’s total historical past each time a choice have to be made. Appropriately safeguarded AI can summarize years of encounters, assist medicine reconciliation, clarify a laboratory pattern in strange language, and floor a sample buried throughout a number of suppliers. Massive client platforms have already begun connecting AI assistants to medical data; Amazon’s Health AI, for instance, attracts on an individual’s One Medical historical past to offer customized explanations and steerage. As soon as the report will be assembled, a succesful assistant can lastly make extra of it legible.
Legibility, nevertheless, just isn’t reliability. The farther AI strikes from explaining a report towards appearing on it, the thinner the proof turns into. A 2026 scoping review of agentic AI in healthcare discovered that a lot of the accessible research have been exploratory and lacked sturdy scientific validation, and that just one trial concerned sufferers. An assistant working from an incomplete, duplicated, or subtly fallacious report can produce a fluent and believable conclusion that’s nonetheless fallacious. AI doesn’t make knowledge high quality much less necessary. It makes the implications of poor knowledge high quality more durable to disregard.
AI can not learn what was by no means written
There’s a extra elementary limitation, and it has much less to do with the mannequin than with the report itself. A longitudinal report can inform us what occurred, but it surely not often tells us sufficient about why. It preserves the encounter, the prognosis, the outcome, and the prescription whereas shedding a lot of the reasoning that surrounded them. Why was one remedy chosen over one other? What was the particular person hoping to protect at that time in life? Who else was serving to? What modified after the go to, and what did a member of the family discover earlier than anybody thought to schedule one other one?
Suppose a daughter has spent the previous yr serving to her mom handle a handful of power circumstances throughout three practices. She has carried out all the things the primary spherical requested of her. She has assembled the report, and she will be able to see each go to, each outcome, and each prescription in a single place. What she can not discover wherever in it’s the second, someday within the spring, when she observed her mom was now not fairly herself: the skipped meal, the stroll that obtained shorter, the tablet organizer that stopped emptying on schedule. None of that was an occasion, and none of it generated a declare. By the point the report catches up, it should doc the consequence, a fall or an admission, with out the months of evolving context that might have made the consequence comprehensible and might need created an earlier alternative to reply.
These alerts are usually not peripheral to well being. They usually decide whether or not a plan is lifelike, whether or not a change is significant, and whether or not somebody follows via, and so they clarify why a clinically full report can stay an incomplete image of an individual. AI can analyze what it might probably attain, but it surely can not get better context that no system collected, determine whose model of the story ought to govern, or decide who might act on what it finds. These questions belong to continuity, governance, and accountability relatively than to the mannequin.
There’s a additional hole that I’ll solely word right here. The daughter just isn’t the one one standing exterior the report. The aide who comes three mornings per week, the care supervisor on the Space Company on Getting older, the pharmacist who observed the refills slipping: most people who see the mom most frequently have been by no means on the affected person entry rails in any respect, and their programs, the place they’ve programs, are nonetheless within the first spherical. That deserves its personal remedy. For now, it is sufficient to say that the report the daughter assembled is incomplete not solely in what it captures however in who was ever in a position to write to it.
The actual contest is who will get to behave
Put these developments collectively and the form of the subsequent few years comes into focus. The assembled report is now useful sufficient that one thing will act on it. The open questions are what is going to act on it, for whom, and underneath whose authority. The identical missed refill may immediate a reminder from a daughter, an outreach name from a care staff, an intervention from a well being plan, or a business prediction by a platform.
Worth invitations seize. The events that acquire entry to the assembled report, notably these whose enterprise fashions rely on it, will affect what that report turns into: a useful resource that helps a person, household, and care staff make higher choices, or an enter optimized primarily for a mannequin, marketer, underwriter, or establishment. The infrastructure to assemble a report is more and more accessible. The infrastructure to make sure that the report continues to work for the particular person whose life it describes just isn’t.
Focus additionally creates publicity, and the protections across the report can change because it strikes. The largest healthcare data breach reported in 2025 concerned Conduent, a enterprise affiliate whose back-office companies prolonged throughout healthcare organizations and authorities businesses; the reported variety of folks affected was later revised to greater than 62 million. Even when data stay technically distributed, a standard interface, credential, or middleman turns into a concentrated level of entry and due to this fact a useful goal. And when a person directs well being info to an app that’s neither a HIPAA-covered entity nor a enterprise affiliate, HHS has explained that the data the app receives is generally no longer protected by HIPAA. Different protections might apply, together with the FTC’s Health Breach Notification Rule and state client well being privateness legal guidelines, however the result’s a unique and extra fragmented authorized regime. The purpose is to not cease assembling the report however to make the tradeoffs seen, and to deal with privateness, safety, and governance as a part of the product relatively than language buried in its phrases.
What comes subsequent is continuity infrastructure
I’m not a impartial observer. HealthHive, the corporate I co-founded, is constructed round this downside. However the architectural query exists no matter which organizations in the end reply it, and the daughter makes it concrete.
What she wants just isn’t a greater pile. She wants a spot the place the scientific report is preserved because the authoritative account of the care that was delivered; the place the context that solely she and her mom possess will be added with out silently rewriting the clinician’s account; and the place the best understanding reaches the best participant in the meanwhile a choice is being made. I consider this as continuity infrastructure: a ruled, longitudinal layer of understanding that sits alongside the scientific report relatively than changing it.
Two properties of that layer are particularly necessary. The primary is that it distinguishes supply from interpretation. The daughter’s statement that her mom’s walks have shortened just isn’t a scientific discovering, and it shouldn’t masquerade as one; however neither ought to it vanish as a result of it lacks a billing code. Protecting the 2 visibly distinct, with provenance hooked up to every, is what permits a clinician to belief the report and the household to belief that their contribution was heard. The second is that permissions and adjustments are seen. The daughter’s authority to contribute and to see info ought to relaxation on an express function or authorization relatively than on the connection alone, and people roles change. A sibling joins the trouble, a house well being aide arrives, a brand new specialist enters the image, and in some unspecified time in the future, the mom herself might turn into much less in a position to direct her personal care. A layer that can’t make these transitions legible will both exclude the individuals who matter or admit everybody with no accountability in any respect.
AI has an actual function inside this structure. It might probably assist the daughter put together for her mom’s appointment with out pretending she is the doctor, and it might probably assist the clinician see what modified at residence with out asking the household to reconstruct six months from reminiscence. A company can use it to acknowledge danger earlier than the subsequent encounter relatively than after the subsequent declare. What it shouldn’t do is silently turn into the proprietor of the story or the ultimate authority over what occurs subsequent.
A continuity layer just isn’t exempt from this hazard. By making info simpler to succeed in, it might probably turn into one other concentrated and enticing level of entry. It ought to due to this fact be judged not solely by what it might probably assemble, however by what it refuses to gather, how clearly it preserves provenance, whether or not entry is seen and auditable, and whether or not permissions will be withdrawn or modified with out dismantling the particular person’s historical past. In any other case, continuity turns into one other identify for focus.
Why hasn’t this already occurred?
A good objection is that items of this layer exist already. Affected person portals settle for messages, patient-reported outcomes seize expertise, distant monitoring brings info from the house into scientific workflows, and report aggregators can add context. Maybe the incumbents merely take in this operate, governance and all.
That risk can’t be dominated out. However these instruments are usually ruled by the establishment, program, or vendor that deployed them. The knowledge they acquire doesn’t reliably journey with the particular person once they change medical doctors, transfer between plans, or enter a brand new stage of life. Nor have been most designed to protect the household’s account alongside institutional data with out complicated the 2.
Context will be collected immediately. The take a look at just isn’t whether or not an incumbent can add these options. It’s whether or not continuity survives when the incumbent’s relationship with the particular person ends. An establishment can sponsor the layer, but when altering medical doctors, plans, employers, or distributors additionally adjustments who controls the amassed story, the system just isn’t longitudinal in the best way that issues. A continuity layer earns the identify infrastructure provided that identification, permissions, provenance, and portability persist independently of any single sponsor.
Who pays just isn’t who governs
The particular person whose life the report describes won’t all the time be the paying buyer, nor should they be. Well being programs, well being plans, employers, group organizations, and different establishments might have sound causes to fund continuity as a result of they profit when folks and the folks supporting them make higher choices. Cost and governance are usually not the identical factor. Sponsoring the infrastructure shouldn’t confer the best to acceptable the particular person’s story or quietly optimize it for a function the particular person doesn’t perceive. The financial cut price ought to be express: the sponsor is buying an outlined service and a measurable profit, and the particular person’s longitudinal story just isn’t a part of the acquisition.
That boundary belongs within the product’s permissions, contracts, and technical structure. If it relies upon solely on the sponsor’s goodwill, “person-centered” is branding relatively than governance.
The decisive query won’t be which system is aware of essentially the most. It will likely be which system stays answerable to the particular person after it is aware of.
The second spherical
Affected person entry created the potential for one thing healthcare has by no means had: an understanding of the individual that can persist throughout encounters, establishments, and altering relationships with out belonging completely to any considered one of them. Half one referred to as affected person entry a basis relatively than a end line, and a basis is an invite to construct, but it surely doesn’t decide what goes on high. We will construct clever instruments that assist people and the folks they belief perceive and steward well being over a lifetime. Or we will enable the pile we labored so onerous to assemble to turn into essentially the most environment friendly enter ever created for programs that have been by no means designed to serve the particular person.
The second spherical is subtler than the primary as a result of the Whammy now not seems to be like shedding your knowledge. It seems to be like profitable it after which handing it to whoever asks first.
Massive bucks. No Whammies. This time, watch the board extra rigorously.
Stephen Farber is Co-Founder and CEO of HealthHive, and the Vice Chair on the Board of Administrators of the American Society on Aging.
