Now this is patient-centered care.

This may be the most wonderful participatory innovation I’ve seen since OpenNotes in 2012.  This one’s completely different: OpenNotes is about patient access to the medical record, but this one invites patients to see their tissue samples, simply so they can have a sense that their tumor is not something that’s unknowably beyond their experience. Here’s the 2018 article about it. (I speak from experience when I say there’s something inexpressably powerful about anything that lets me understand what’s happening. In my case it was viewing my CT scans in the OsiriX open source radiology viewer.)

Started in 2017 by pathologist Dr. Lija Joseph at Lowell (Mass.) General Hospital (part of the Wellforce Healthcare system, with Tufts and Melrose Wakefield Hospital), the program has produced some heartwarming responses from patients age 13 to 86. Over 100 of them, so far.

See Dr. Joseph and one of her patients on this WCVB news clip from 2018. Other coverage:

• 3 minute video, November 2019: “The value of this program has been astonishing” … “Some of them just want to touch the computer screen”

• An article on the website of the College of American Pathologists, with multiple videos: Pathologist Creates Powerful Program Providing Patients an Up-Close and Personal Look at Their Cancer

Linnea Olson with Dr Joseph in her office

And how did this innovation arise? Dr. Joseph read the story of famed lung cancer e-patient Linnea Olson @1111linno (who also lives in Lowell), and thought to herself, “A patient in Lowell should be able to view an example of the type of her cancer in Lowell!” This is truly patient-centered thinking.

Linnea lives not far from me so we’ve met; I reached out to her about this post and she said this about Dr. Joseph:

She is incredibly gracious and I think this program is wonderful. When I finally got to see a slide of my own cancerous cells under a microscope, I found it so empowering.

 

It has always struck me as odd that I was not shown my original tumor (or at least images of it) – something that was part of me. I applaud Dr Joseph for demystifying a disease that is often anthropomorphized into “other”—it is actually just our own cells run amok. Once you see that it is less frightening.

Congratulations to Dr. Joseph and her team, and thanks to radiologist and SPM lifetime member Matthew Katz MD (at left in this photo, at the Lowell General lunchroom) for telling me about it. (And yes, for the eagle-eyed, that’s my Interoperability Showcase volunteer shirt. :-) The crusading never ends!)