Why patient-owned health records beat a portal login

On KevinMD, patient advocate Monica McEathron wrote about a note in her medical record that labeled her insulin pump a “primary weapon.” Her endocrinology team later documented that the insulin correction was appropriate and that the dangerous low came from a device communication failure. The note stayed in her chart anyway, waiting for the next emergency clinician to read it before reading anything else.

I read her piece twice. Then I thought about a ruling out of Washington state. A patient asked her clinic for the AI recording of her own telehealth appointment. The clinic argued the recording was a drafting tool, not part of her record, and a judge agreed. Put those two stories side by side. A “weaponized” label written about you in a medical chart can follow you for years, and you have almost no power to change it. A recording of your own voice describing your own body can be withheld from you because the system decided it doesn’t count.

This is what patients face. Not bad doctors. It’s a health care system that decides what your health story is, who gets to write it, and whether you’re even allowed to read it.

I learned this over six years of fertility treatment. I saw multiple clinics and specialists. I was eventually, after many years, diagnosed with endometriosis. I spent more than $100,000 trying to build a family, and every new appointment with a clinician and every new provider meant starting over. I’d sit across from a doctor and try to squeeze years of history into a few minutes. I had to decide on the spot what mattered and what didn’t, and I was terrified that the detail I left out would be the one that changed everything.

Each clinic kept its own version of me. None of them had the entire picture of my health journey. The only complete record of my fertility journey lived in my head, my Notes app, and late-night conversations with my husband at the kitchen island.

Years before I ever walked into a fertility clinic, a scan picked up an endometrioma on my ovary. An endometrioma is endometriosis; a $500 second opinion confirmed this. It’s right there in the report, still sitting in my file. And yet, I wasn’t formally diagnosed with endometriosis until five years into fertility treatment. I had every symptom the whole time. Nobody put those two things together, because nobody had both pieces of information. The scan was in one file. The symptoms were in my Notes app. I only found it because I asked for my own records and dug through them myself. Would it have changed those five years? I’ll never know, but I’ll always wonder.

The crux of the problem is that the parts that mattered most to me rarely made it into anyone’s chart. For instance, how my body responded between appointments. The symptoms that showed up at 2 a.m. The side effects I tracked myself. My hormone fluctuations. What I’d already tried. Whether I even trusted the diagnosis I was given. This lived experience was vitally important to me. I felt it should inform my care team and care journey; however, I had no official place for it to go.

I think back to another appointment where I brought with me a spreadsheet that in detail mapped out my hormone fluctuations and data captured from my iWatch and Oura ring. Surely that might be of value? The doctor on the other side of the desk dismissed it (and the work I’d put into it) as unimportant and of no value.

We talk a lot about giving patients access to their health care records. But what the health care system defines as access is a login to a patient portal. It’s a PDF you can download, a lab report or value with no context. Patients are given access to whatever the institution chooses to release. They decide for you.

What Monica and the Washington patient were missing wasn’t access. It was sovereignty: the standing to treat your health record as, at least in part, yours to own.

Imagine if your bank operated this way. You can log in and see your balance, but not every transaction. Your statements go to your accountant, but not to you. Someone flagged your account as “high risk” years ago, and you can’t see why or get the flag removed. The bank recorded your last call about a disputed charge, but that recording is for internal use only.

No banking consumer would accept that. We’d call it outrageous, switch banks, maybe call a lawyer. Yet this is how most of us are expected to live with our health information, and there’s no other bank to switch to. It’s our money in one case and our bodies and health data in the other, and somehow we’ve decided the money deserves more protection.

Here’s what I think health care sovereignty means in practice:

• The right to see everything written or recorded about you: That includes the audio and AI-generated drafts that now shape clinical notes. If a machine is listening to your appointment, you should be able to hear what it heard.
• The right to add your own account: Symptoms, timelines, what you’ve tried, what you noticed at home. Not in place of the physician’s note, but right next to it, where the next clinician will actually see it.
• The right to challenge a label, and have that challenge travel with it: Most privacy laws already let you request a correction, but the institution decides whether to grant it. Monica’s proposal is simple: Mark contested labels as disputed or contradicted, so no one reads “weapon” without also reading the evidence against it.
• The right to carry your personal health record with you: People see multiple specialists for their condition. Doctors retire. Clinics close. About 5.9 million adults in Canada, where I live, have no regular family doctor or nurse practitioner at all. Millions more in the U.S. also live without access to a primary care doctor. In this scenario, the patient is already the only continuity in the system. We should give them the tools to act like it.

A friend of mine recently spent a weekend in the emergency department in excruciating pain and unable to walk. Four years earlier, in a location across the country, the same condition caused a saddle pulmonary embolism that nearly killed them. The ER doctor knew nothing about that history. Not a line. My friend spent the weekend piecing together their own history for the people treating them, begging them to take the context seriously. When my friend asked their ER doctor why nobody had the full picture, the answer was a shrug: “Well, that’s our health care system.” One country, two different ERs, and a near-fatal history that didn’t make the trip.

I want to be careful here, because this argument is easy to caricature. I’m not saying patients should write their own diagnoses, or that clinicians’ notes don’t matter. Most of the doctors I saw during my fertility journey were working hard inside a system that handed them fragments too. A physician who walks in to find a patient’s own organized history, in the patient’s own words, has more to work with, not less.

But I’m done pretending the current arrangement is neutral. When the institution holds the only official version of your health story, the institution’s version wins. The label wins over the lab result. The medical chart wins over the patient in the room. And the woman who spent six years and her savings trying to be understood is still the one person who isn’t allowed, by the institution established to serve her, to hold the pen and write her own health story.

Patient-built health records already exist, and more are coming. The technology isn’t the hard part. The hard part is whether health systems, regulators, and courts will treat what patients write about their own bodies as part of the record, or as noise.

I know my answer. I’ve carried my story from clinic to clinic for years. I want the right to own it.

Jessica Chalk is a patient advocate.