A Twitter chat this morning, prompted by SPM member John Sharp, produced a rapid and wonderful change in an ongoing problem: so often articles about patients aren’t open to patients. In this case it’s an intriguing new article today in the esteemed New England Journal of Medicine: “Time for a Patient-Driven Health Information Economy?”
Well, tweets sent to lead author Ken Mandl led within an hour to them opening access!
Your assignment: go make it worth their effort – go read it, think, and if you have something to contribute on the subject, comment! (That’s the “Submit a Letter” link on the sidebar, as shown below. Or, of course, discussion here is welcome, or on Twitter, or Facebook, or LinkedIn – publishers love it when their articles get traction on social media.)
A special hat tip for wisecracking goes to SPM Board Member at Large Peter Elias, a recently retired primary care physician, for popping up on Facebook with the New Yorker cartoon below. :-)
Seriously – go read.
Longtime readers of this blog know that for years Susannah Fox was its heart and soul. She was a devoted friend of “Doc Tom” Ferguson, creator of the e-patient concept in the 1990s, and for years at Pew Research she was the dependable guru of Pew’s health research. (For a summary of her work see the Pew Health Tips page.) So anytime she says “Everyone. Read this” I stop what I’m doing.
She said it an hour ago, so I did. Here’s the sequence of tweets she posted. The story is an astounding demolition of the idea that patients have nothing to offer. Here’s the real story, told by ProPublica and This American Life.
A long time ago (in internet years), the original HIPAA regulations were promulgated. (The final Privacy Rule was published in 2000.) They’ve been tweaked and updated over the years, most notably in the “mega-reg” promulgated a few years back in order to implement the updates included in the HITECH Act. For purposes of the present discussion, I am interested in the patient right to medical record information included in HIPAA, rather than privacy and security protections for patient data. The core elements of the HIPAA rule relevant to patient access to medical records have not changed since the rule was originally promulgated. That original rule did not expand all that much on the access to records rules in some of the more enlightened states in the Union, though it has pulled up some of the laggards. The HITECH “mega-rule” made only a minor change to this rule with respect to records stored off-site.
One sign of a movement’s progress is when the establishment takes notice. This one’s a biggie: Regina Holliday’s Walking Gallery of Healthcare (Facebook) is in the January 16 edition of the AMA Journal of Ethics. A five page article! Click the image to view it.
We’ve said since the founding of our society that participatory medicine is a movement – a social movement. One of the most conspicuous signs of this movement has been the artist / activist @ReginaHolliday and her Walking Gallery of Healthcare – over 400 jackets she and other artists have painted for people, putting their medical story on their jacket, gratis, because “everyone’s got a medical story but nobody can see them.” This ongoing project for “art in the environment” fixes that. (See her post this week that lists all the artists and jackets.)
Regina has done 348 jackets; 42 other artists have done 53 more, all free* if you’ll wear them to conferences – because believe me, they start conversations about healthcare. And that’s how movements grow.
*Will you support the costs of this work? The painters’ labor is free but the paint and shipping aren’t. There’s a GoFundMe page to raise money for the next 400 jackets. Many of us have contributed – will you? It’s a movement, and it’s getting traction. Put your shoulder to it!
I was at dinner with friends recently when I noticed that my right thumb was red, swollen and painful. One of my friends is a biochemist and instructed me to immediately soak the finger in hot water. I continued our social evening dipping my right thumb in and out of a cup of boiling water.
Early the next morning (Sunday) I called my primary care practice, looking for the on-call physician. Luckily, my doctor of 40 years was on call. He immediately requested that I send him a photo of the thumb and he prescribed a strong oral antibiotic. I had a staph infection. He informed me that I should continue the soaks, apply a topical antibiotic and send photos to him via email every couple of hours. If the infection started to spread. I would have to go into the hospital for intravenous antibiotic treatment. Over the next two days the doctor continued to monitor the finger with photos sent via email. The oral prescription worked and I avoided a hospital/ER visit which saved me, and the healthcare system, time and money.
This blog welcomes guest posts from SPM members on relevant topics. One of our Society’s newest members, Susan Cournoyer, is a tech industry analyst, and is familiar with the concept of systems that are well designed or weakly designed, e.g. with a “single point of failure” – a single item that, if it breaks, makes the whole system fail.
When that “system” is patient feedback, the result can be that nobody in the whole system ever hears the patient’s voice – a complete failure of patient experience, rendering patient-centered care design impossible. Her story sounds all too familiar.
When no other feedback channels exist, the Patient Advocate becomes a single point of failure
“Have you reached out to Louise*,” the hospital administrator asked me. “She’s our Patient Advocate.” The manager for women’s healthcare continued, “I know you called to tell us about your experiences, but we can’t listen to just anybody who calls in.”
Big news: a multi-foundation $10 million grant will spread OpenNotes access to fifty million more patients! Nearly 20% of America will have full access to their providers’ visit notes, so they can review them from anywhere!
Regular readers know we’ve always been loud fans of the OpenNotes project. Initially funded by Robert Wood Johnson Foundation – who also funded “Doc Tom” Ferguson’s white paper, the basis for our Society – the project established that when patients can see everything the provider wrote, good things happen (and the sky doesn’t fall).
For real-world examples, at bottom of this post see the “must read” set of stories we posted last year. It’s an expression of one of my own aphorisms: “People perform better when they’re informed better,” in direct contrast to the famous Seinfeld episode where Elaine tries to look in her chart and sees she’s been marked “difficult.”:-)
At bottom of this post is the history of the project via our many blog posts here. Here’s the OpenNotes website with many resources, here’s MyOpenNotes on Twitter, here’s the official press release, and here’s the email I got on Monday:
In our work to change healthcare’s beliefs about the patient-clinician relationship, nothing has had greater impact in less time than our post two weeks ago The truth about that “your Googling and my medical degree” mug. In one week it became one of our most-commented posts ever; it has 3,500 Facebook mentions and hundreds of Twitter mentions; we’ve had two follow-up posts here and here; and today, two weeks later, it’s been picked up and cross-posted on KevinMD, the most-read physician blog in the world, with the revised title Googling is a Sign of an Engaged Patient.
Please go engage.
As SPM advances the cause of patients as responsible drivers of their care, we sometimes hear denials or complaints from physicians who feel that e-patients needy, uninformed, self-centered burdens on busy clinicians’ time. Well, here’s a juicy counter-example – in the BMJ, one of the world’s leading medical journals.
Swedish SPM member Sara Riggare is co-author of this article in the BMJ that I hope many future authors will cite: Patients organise and train doctors to provide better care (BMJ 2015;351:h6318.)
Its importance in the participatory medicine movement is that it documents the specific things that Sara and co-author Kenton Unruh do to carry, organize, and manage a significant part of the burden of case management, in their partnerships with clinicians. (Both have Parkinson disease.) Future authors will be able to cite this in their own articles, making this topic part of the literature of participatory medicine.
If you know of other such citable sources, please add them in the comments.