On Monday, Health Secretary Robert F. Kennedy Jr. argued that researchers should have wider access to Americans’ health data. Speaking at a MAHA Open Data Summit, he described linking medical records, insurance claims, vaccination histories, and other information so AI could search for patterns in chronic illness. A qualified researcher with a legitimate hypothesis, he said, shouldn’t need permission from a “gatekeeper.”
For five years, I worked in health care quality and compliance. Part of my job was making sure that when someone opened a patient’s chart, they had a reason to be there. I understand why Kennedy wants researchers to find answers. I also know that gatekeeper sounds a lot more obstructive than the person who can tell a patient who looked at her pregnancy record.
Tomorrow morning, Brock and I leave for Portland with Ezra, whose MRI is finally here. I have prepared the clothes he was instructed to wear, with no metal and no glitter, and I am trying to prepare myself for the hours when he will be hungry and cannot eat. He will cry, my heart will break, and we will remind ourselves why we are doing this. We will have Daddy with us, and we will get through it together.
Our daughter is staying with Grammy. She has a driver to and from ballet and a backup driver, four additional adults on her school pickup list, school clothes and backup school clothes, dance clothes and backup dance clothes, pajamas and backup pajamas. I was feeling pretty competent about this operation until I realized that, although she has spent nights with Grammy before, I have never been four and a half hours away from her. I may need to add a backup mother to the packing list. The preparations are excessive only if everything goes exactly as planned. That is the thing about safeguards: when they work, they can look like an unreasonable amount of trouble undertaken by someone with a clipboard.
Health care already has systems for sharing records when a patient needs care. At clinics where I worked, a regional Health Information Exchange helped providers at different practices see relevant information about a patient they were treating. If someone saw a primary care provider in one town and a mental health provider elsewhere, both could get a more complete picture of the medications that person was taking. Our patients could opt out of that exchange. Epic’s Care Everywhere also lets participating organizations exchange records, including across different electronic-record systems.
A clinic can send lab results to another provider treating the patient without asking for a fresh signed authorization every time. That is continuity of care: a defined purpose involving people responsible for the same patient. Kennedy’s proposal to expand researchers’ access to linked records raises different questions about purpose, permission, and oversight.
At one clinic, I discovered that front-desk accounts could open entire patient records, far beyond what their duties required. Some staff also had access to a prescription-refill workflow that didn’t belong in their roles. We changed those permissions. It was an unglamorous fix involving job duties and buttons, which is generally how important privacy work looks before anyone decides to describe it as an obstacle to progress.
Then a patient called. Someone close to her had learned she was pregnant before she had chosen to tell them, and she worried the information had come from our clinic. I used the chart’s audit trail to determine which employees had opened her record and when, then acted on what I found. The audit trail alone couldn’t tell us everything about how the news traveled. It did give us something more useful than an assurance that privacy was a top priority.
Kennedy singled out the CDC’s Vaccine Safety Datalink and complained about the restrictions on outside researchers. Yet the CDC already describes a path for researchers to request certain datasets: they submit a proposal, obtain an institutional review board determination, sign confidentiality documents, and work through a secure research center. There may be legitimate arguments about whether that process is too slow or restrictive. Kennedy owes the public a more precise answer than calling the people who review access “gatekeepers.”
What would his preferred system allow an outside researcher to see? Could individual records leave a secure environment? Who approves a new use of the data, checks the audit logs, revokes access, and investigates a complaint? HHS announced an NIH–CMS autism research pilot last year with a data-use agreement and promised privacy protections, but that limited arrangement doesn’t answer what Kennedy means by access for hundreds of additional researchers.
And what, exactly, is AI supposed to settle? It can search an enormous number of records quickly. It can’t make an incomplete billing record into a complete medical history or turn an association into a cause. If a large share of children receive a vaccine, many autistic children will have received it too; that observation doesn’t establish that one caused the other. Substantial research has found no association between vaccination and autism. Children’s records shouldn’t become an endlessly searchable invitation to keep announcing that the answer must be hiding somewhere, while autistic people wait for this country to treat their lives as lives rather than as a mystery to solve.
There is another story today about the protection a person needs before a system fails them. The Guardian reports that utilities disconnected electricity 173,598 times across ten states in July, 28 percent more than in July 2024. That is a count from ten states, not the national total. It is also a great many households trying to live through dangerous heat while the company responsible for their power tries to collect a debt.
I know what it is to have an electric bill badly overdue. Here in Oregon, utilities regulated by the Public Utility Commission cannot disconnect service for nonpayment during certain heat alerts or unhealthy air-quality conditions. It gives a family a chance to keep the air conditioning and the refrigerator running through a dangerous day. Roughly one in six U.S. households is behind on an energy bill, the National Energy Assistance Directors Association estimates. Where heat-alert protections apply, a few extra days can keep an overdue account from becoming an immediate crisis.
The White House says it is working to bring energy prices down. Kennedy says broader data access will help answer health questions. Families deserve to know how those promises work when they meet a shutoff notice or a medical chart. Who is allowed to make the decision, what can they see, and who has to answer if they get it wrong?
My husband painted half our house its new green yesterday, and I planted Irish moss because I wanted one more excuse to stand outside and look at it. For a moment, I breathed in the knowledge that we get to stay here. Tomorrow we will leave our daughter with people we trust and take Ezra four and a half hours from home, carrying snacks, backup clothes, and as much courage as I can manage.
I can’t make every part of this week safe by preparing for it. I can make sure our daughter has someone to pick her up, that Ezra has what he needs for the MRI, and that we know who to call if a plan changes. When a government or a company asks families to trust a system, it owes them at least that much care in return.
A little scheduling note: I likely won’t publish The Homefront Report on Wednesday or Thursday while we travel for Ezra’s MRI and find our way home. Thank you for giving us a couple of days to focus on him.
If this helped put a person behind a patient chart or a power bill, please restack it so someone else can see them too.
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This week the adventure includes a brave little boy, enough backup pajamas to withstand a minor logistical collapse, and a green house we are grateful to come home to.
Safe travels, Shanley! And focus on little Ezra and your own family's health-and-welfare. We'll all be here sending good vibes, prayers, etc. until you return.
If anyone gets my health information without me signing a consent form I will sue the government.