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.
One pillar of participatory medicine, as SPM co-chair Dr. Danny Sands often says, is access to our medical records: “How can patients participate if they can’t see what I see??” But a major impediment to free-flowing information is incompetence or malfeasance in protecting our data, which makes some people want to clamp down. Patients and participatory providers need our health information to be as secure and free-flowing as banking information … which is not perfect but it’s an industry where they take privacy seriously.
Charles Ornstein @CharlesOrnstein of ProPublica has a new piece today on the NPR “Shots” health blog, talking about some really heinous violations by immoral individuals and sometimes sloppy individuals, e.g. a doctor who gave his password to a temp employee. (Oy.)
Coffee mugs are like totems, spiritual items that empower us. Many of us have a favorite mug that helps us feel strong enough to conquer the day ahead. Some of us may have several favorites, and choose a mug to suit our mood or daily agenda.
In this way, a coffee mug serves as a personal “traffic advisory” sign, which is why the Google mug image has struck such a nerve among patient activists. From the angry patient perspective, the physicians getting a chuckle out of this mug are essentially giving an invisible middle finger to patients who hope to manage their own health, control personal medical care costs, and live well. To me, the joke is less about Google search results than it is some doctors’ perceptions about patient behavior. What a hoot that patients would spend time and energy online researching our symptoms rather than go to the experts and do what we’re told, right?
You can’t make this stuff up.
One of our most-commented posts ever was Monday’s The truth about that “your Googling and my medical degree” mug, about the coffee mug that went viral on Facebook this week.
Well, some docs saw it and emailed, asking where to buy one! Here’s the answer:
Today’s Washington Post has a terrific, carefully researched, precise article – on the front page of the Health & Science section – about the reality of a good patient-clinician partnership: Does your doctor listen when you talk? by Suzanne Allard Levingston. (As often happens, the print edition’s headline is different: “Patients make themselves heard,” with the subtitle “Shared decision-making supplants the idea that doctor knows best.”
It’s accompanied by a great “tips” sidebar Here’s how patients can take a larger part in their own care.
The importance of this piece is heightened by the surprise appearance yesterday of the viral (and badly misfocused) coffee mug we blogged about: The truth about that “your Googling and my medical degree” mug.
I love that this article prominently features so many well known SPM members, leaders and friends: Gilles Frydman of ACOR and SmartPatients, Danny Sands, ImproveCareNow (several SPM members in that group), Peter Margolis, Mayo’s Victor Montori, PCORI, the BMJ’s Patient Partnership campaign, and more.
But I love even more that it leads with someone who’s not in our circle of “usual suspects” – 22 year old Samantha Kennedy – and includes others as well.
This is truly a social movement, folks, and it’s growing. Reality is evolving. Kudos to the writer and her editors for getting this tricky evolution exactly right.
I can’t tell you how many people have flung this Facebook item at me since last night, starting with my wife. :-) It’s already approaching 25,000 shares.
(Update: at 11am ET on Dec 1 it’s up to 73,000 shares in 48 hours. I’d say it’s going viral…)
Listen, people: Googling does not mean I think I’m a doctor. It’s a sign of being an engaged, empowered “e-patient.”
I partner with great doctors – I don’t tell them what to do. And they welcome me doing it.
I personally am completely opposed to a patient going in and saying “I’ve decided I have condition X, and I want you to prescribe 42mg QID of medication Y.” I mean, have you ever seen the things medical students have to learn to get their license??
But I’m all in favor of a patient saying, “I have symptoms A and B, and from what I can tell from websites J and Q, that sounds like it could be M.” Explain your thinking, identify your source, and try to solve the diagnostic puzzle together: Collaborate.
The flip side is that it’s demonstrably wrong for a doctor to insist that their diagnosis must be right; the Society to Improve Diagnosis in Medicine has lots of data on that, and the National Academy of Medicine recently published a big report on it. (See SPM patient member Peggy Zuckerman’s recent spot on the NBC News item about that report.)
And to flip it again, patient engagement isn’t a synonym for “the patient is always right.” (See SPM co-chair Dr. Danny Sands’ five minute video about that the other day.)
I’m short on time so I’ll just post what I said on Facebook:
Dr. Danny Sands is one of the co-founders of our Society for Participatory Medicine, a great primary care physician, and a real thought leader who’s been doing this modern stuff for twenty years. (He co-authored the first journal paper on how to do patient-clinician email without ruining the doc’s life – in 1998!)
Last month at the Patient Engagement Summit in San Diego, Healthcare IT News recorded this hallway interview with him. I’ve never seen it described better! He doesn’t just talk about the idea, he gets into some common misconceptions. Share widely!
We’re thrilled that other SPM members spoke there too: board member Kyra Bobinet was the other keynote, and member Alicia Staley led a session. This is one sign that an organization’s thought leadership is taking hold.