Whose Record Is It?

A recent piece in the New York Times profiled a young man with a remarkable medical history, and an equally remarkable approach to sharing it. I think it raises some profound issues regarding the self-monitoring movement and the “ownership” of patients’ health information, both of which have the potential to change our traditional practices in a big way.

The guy – Steven Keating – is not your average Joe. He is a graduate student at MIT who trained as a mechanical engineer and is working in the cutting-edge MIT Media Lab. He also had a brain tumor the size of a tennis ball. His website hosts all of his medical records, including his pre- and post-op brain scans and, believe it or not, a video of his tumor resection surgery.

The article described the struggle that he had in assembling all of his records, which obviously had nothing to do with his technical skills, and everything to do with the sorry state of medical records, electronic or otherwise. Despite the fact that federal law recognizes that patients be provided with “their” records, we have traditionally behaved as if the records are ours, and we are doing patients a big favor by “sharing” them. The challenge for patients is compounded by the generally poor capability of present-day EMRs and storage systems to share data. Of course, this “design feature” just reflects (and thereby helps preserve) the attitude that the data belongs to the doctors and hospitals, and not the patients. Ready or not, that attitude has to change.

First, we no longer have a monopoly on generating the data. In an era where patients have access to monitoring devices and increasingly sophisticated sensors, and apps that can store, track and analyze their output, we will be asking patients for their test results, not the other way around. This is the premise behind Eric Topol’s new book, The Patient Will See You Now.  I have already been emailed an ECG rhythm strip by one of my patients that he took himself using a sensor that snaps onto the back of an iPhone .  In that world, it makes no sense to pretend that the tracing is “mine.” It is not; it is his, and he chose to share it with me.

Second, I really think we have reached a tipping point in terms of what patients will tolerate. In a world where I can pay all my bills electronically, get a download of all of my Amazon purchases from the last year, make a dinner reservation through OpenTable, and even file my taxes electronically, how much longer do you think patients will be willing to fax release forms and get paper copies of some unreadable EMR notes, or poor quality photocopies of low-resolution print-outs of some imaging study, and then shlep them across town so we can scan them into a different electronic system?

I think we had better get cracking to meet the growing demands of our patients to help them interpret the data they already have, and to surrender control of what we have to them.

What do you think?

3 thoughts on “Whose Record Is It?

  1. Ira,

    Each of your posts are dead-on. I enjoy reading them. They are informative and thought provoking!

    Alex Hellinger
    Executive Director
    Lenox Hill HealthPlex
    30 7th Avenue
    New York, NY 10011
    Phone: (646) 665-6001


    1. Thanks! We have work to do to make “patient-centered care” a reality, but I believe we are on the right path, and changing our thinking about medical records is part of it.

  2. If it’s my medical record- intake staff should see “cancer patient”. My oncologists had me gain 10 lbs to survive radiation. I’m a small person. My oncologists are monitoring my weight/diet now. I also lifted weights 50 lbs, now 3 lbs. That thickened my mid-section and I have radiation bloat. This sets me up for nagging. Some PCPs consider this an affront for federally suggested BMI, proactive dieting-weight loss. One head nurse called me up for a heart to heart why I should be compliant. She ended up saying, “I’m so sorry. We’ve been treating you wrong. I wish that I had known you were a cancer patient.” That doctor had tunnel vision- maybe dementia-but he couldn’t consider oncology as part of my life, not even when MD Anderson oncologists called him about these things

    I don’t want to seem to have some mental/emotional, feel sorry for myself drama queen complex by wearing T-shirts that say, “Cancer Patient”. Isn’t an EHR supposed to protect me- and record my health? just a little bit?

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