Now Reading: Patients actually want their entire medical record

Ok, this article isn’t titled that either, it’s titled Insights for Internists: “I Want the Computer to Know Who I Am” and it continues to complement the stream of information from peer reviewed literature that is more or less confirming what people who use robust personal health records already know. I discussed the issue of imaging test results earlier, as you may have read. That article was published in the radiology literature, which is significant, this one is published in the internal medicine literature, which is also significant. When the producers of the content themselves (internists, radiologists) convey what their patients want from them, it’s a powerful adjunct to the patients doing this themselves (and frankly, they’ve been doing it for a really long time…).

This paper was written by a team at Beth Israel Deaconness Hospital, and encompasses data from patient and physician focus groups conducted in multiple cities in 2006-2007. They asked them about how they manage their health information and how they would ideally manage health information. Some of the more important points:

  • They mostly do it – keep their own records – except for the college student group
  • They want full access to all the information. They know about their legal right to see their record, and understand that as currently constructed, this legal right doesn’t grant them functional access (think “73 cents”).
  • Privacy: “worries that appeared to fade rapidly in the face of the desire to have records fully available in emergency settings and with multiple and new providers.”
  • “Strikingly, the health professionals professed far more concern about maintaining privacy than patients.”
  • They understand that their clinicians are busy/stressed, they want the information to supplement and make their (clinicians) work more efficient, not less

I both enjoy and get discouraged by reading this information because it should be more universalized than it is. But it will be. I’ll continue to invite the patient voice wherever I can, and continue to work with leading edge care systems (there are many) who take this information and innovate for patients.

With great thanks to the team at BIDMC and lots of nurses and physicians who are now asking the “why?” question about keeping things from patients. It reminds me of a letter I once composed to send to USA Today, that I never did, and through the magic of Mac OS X spotlight, I found it (and very quickly – amazing). Here’s what I wrote in 2005. Hmm..the passion didn’t fade.

In the USA Today article (“Prescription for Patients: E-mail”), the author felt from her experience that “patients could not be trusted not to abuse doctors time.” What we have known from the beginning is that patients can be trusted – they could always be trusted. And that’s the difference. We are supporting our patients’ trust in us, that we do not waste their time. Isn’t that what matters most?


13 Replies to “Now Reading: Patients actually want their entire medical record”

  1. Thank you SO much. I'm posting about this now on e-patients.net and this will become a standard part of my presentations. I'm so disappointed to learn that it was published in May – it would have been so citable in all the policy meetings this summer!

    And the focus groups were done THREE YEARS AGO! Nov. 2006 to January 2007! So this is hardly an emerging attitude, a 2009 shift in the wind.

    Thanks, Ted.

  2. There's a definite practical reason for patients to have *complete* copies of their medical records (and for parents to have complete medical records for their under-aged or not-yet-interested children), including copies of all media (x-rays, photos, videos of ultrasounds, etc.): being able to reconstruct data long after the practitioners have retired or passed away, the labs have folded, and the hospitals migrated or destroyed their records. This can improve speed and accuracy of diagnosis of events later in the patient's life, and in the case of changing practitioners or new specialists, can bring the practitioner up-to-speed on the patient's individual medical quirks.

Leave a Reply