For most patients, the steady advance of healthcare interoperability has been an unambiguous good. A medical record that arrives before the patient means faster, better-informed care in the emergency department or specialist’s office.
For a smaller group of patients, that same capability is a reason to stay away.
Hannah Galvin, MD, chief health information officer at Cambridge (Mass.) Health Alliance, has spent her clinical career with the patients in that second group — immigrant communities, at-risk and homeless youth, people whose medical histories carry information they have reason to guard. She recalled treating a man in his 20s, badly injured after being struck by a truck, who pleaded with her not to send him for the imaging he needed.
“Please don’t send me to the emergency room. They’ll see my chart, they’ll think I’m an opiate user. They’ll think I’m just drug seeking,” Dr. Galvin recounted the patient saying. The fear, she told Becker’s, was that his record would invite judgment before treatment began.
That fear is not rare among the populations Dr. Galvin treats, and it points to a problem she argues the industry built into interoperability without intending to. Patients with sensitive data face a binary choice: Share everything, or opt out of data sharing altogether. There is no setting in between.
The consequences fall hardest on the patients least able to absorb them. Someone who opts out to shield behavioral health or substance use records does not selectively withhold that one category. They withhold all of it — drug allergies, care team, medication list and everything else a clinician would need in an emergency.
“They are getting meaningfully different care than somebody who has all that data flow, and I would say meaningfully lower quality care,” Dr. Galvin said.
The result, she argues, is an inadvertent disparity: patients who can draw on full interoperability get one standard of care, and those who can’t — whether by personal choice or because state or federal rules limit what they can share — get another.
Dr. Galvin cofounded Shift, an independent nonprofit collaborative, in 2018 with Susan Kressly, MD, former president of the American Academy of Pediatrics, to attack this gap.
Formalized in 2020, the group has pulled major medical associations, EHR vendors and standards bodies onto a board to work on a deceptively simple goal: let patients share parts of their record without surrendering the whole thing. Getting the vendors to the table was deliberate. Having worked for an EHR company herself, Dr. Galvin said she did not want to recommend functionality that made no sense for the companies that would have to build it.
The mechanism is a standards-based approach known as data segmentation — electronically tagging categories of information so a record can travel in pieces rather than all at once. The reason it has not happened at scale, Dr. Galvin conceded, is that it is genuinely difficult to build, touching nearly every part of a medical record and raising hard safety questions along the way. For years, she said, the industry kept kicking the problem down the road because there was no clear return on the investment and plenty of reasons to wait.
In Shift’s vision, control would sit with the patient rather than the clinician. A patient would enter a consent-management platform — a third-party app or a portal such as MyChart — and choose what to share by category, prompted by an informed-consent step that spells out the risks.
“I want to share my behavioral health data with my primary care doctor and my psychiatrist, but I don’t want to share it with my podiatrist,” Dr. Galvin said, describing how the choice might work. Putting the decision in the patient’s hands, rather than the provider’s, is intentional; routing it through clinicians, she said, would add too much burden.
Dr. Galvin does not pretend the approach is simple, or that withholding data is always the safer choice. Letting a patient hide a medication can mean a missed drug interaction; letting them opt out entirely can mean a clinician flying blind.
“I definitely think there is harm both ways. There’s harm to not being in the system at all. There’s harm to not sharing individual medications,” she said. “I don’t pretend that this is not hard. This is incredibly challenging. I think it’s one of the most challenging and nuanced areas in medicine.”
The answer, she argues, is not a single rule but technology flexible enough to handle cases one at a time — with safeguards such as real-time alerts that warn a patient of a potential drug interaction and prompt them to tell their physician. “You can’t boil the ocean,” she said. “So you have to start somewhere.”
For now, the all-or-nothing reality persists. A handful of vendors have begun building proprietary workarounds, but only for a narrow set of cases and only inside their own systems.
A patchwork of state privacy shield laws is now pushing the industry toward a national, interoperable standard, as vendors confront the prospect of building separate functionality for each state. Dr. Galvin believes the goal is more realistic than it was a few years ago. The biggest obstacle, she said, is money.
“Funding is the major barrier,” she said. “We are not very well-funded. We are a nonprofit that is supporting the community.”
The longer-term wager is that giving patients control will rebuild trust among populations that have long had reason to withhold it — and, in doing so, bring them back into a system many now avoid.
At the Becker's 11th Annual IT + Revenue Cycle Conference: The Future of AI & Digital Health, taking place September 14–17 in Chicago, healthcare executives and digital leaders from across the country will come together to explore how AI, interoperability, cybersecurity, and revenue cycle innovation are transforming care delivery, strengthening financial performance, and driving the next era of digital health. Apply for complimentary registration now.
