A large part of the Society for Participatory Medicine’s work is culture change, and that requires pointing to the cultural roots of today’s situation, so that well-meaning people today can understand how we got here, and how absurd today will look in the future. I’ve rarely seen a better example than in today’s New York Times op-ed by Pagan Kennedy, who is known (among many other things) for her writings about world-changing inventions.
As the screen capture at right suggests, the underlying myth was “Patients can’t handle the truth.” It exactly echoes physician sentiment about patient access to medical records via OpenNotes, as we’ve often written.
But “knowledge is power,” as Sir Francis Bacon said centuries ago, as SPM co-chair Dr. Danny Sands often cites in his speeches. And lo and behold, some patients want knowledge and the power it brings.
In the Spring of 2016 I had the opportunity to teach the course New Media and Health Communication for an undergraduate class at The College of New Jersey. The class, designed by Dr. Yifeng Hu, already included an introduction to participatory medicine and patient participation in their own healthcare.
With the help of numerous colleagues from the Society for Participatory Medicine, I added a few more touches to the course:
- Dr. Peter Elias was a guest speaker and framed our course with examples from his family medicine practice. He designed an OpenNotes variation before the concept had a name. My students loved his openness to answer questions and we kept bringing up examples of his presentation throughout the course.
- E-Patient Dave walked us through the newest communication tools and patients and health professionals promoting the patient/physician partnership.
- Regina Holliday told us her life story and inspired us all to always help others, to improve healthcare and to use our creativity to achieve goals. The course was part of the Arts and Communication Studies School at the college and Regina is the perfect example of how arts can be an effective maybe a most effective communication tool.
- Many others SPM-ers accepted to be interviewed by my students and shared details of working in healthcare communications on either the provider or the patient side: Peggy Zuckerman, Danny Sands MD, Kathy Kastner, Alan Spiro, MD, Geri Baumblatt, Casey Quinlan, Danny van Leeuwen, Cheryl Greene, Rahlyn Gossen, Stuart Grande, Jack Whelan, Scott Strange, Ross Martin, MD, and one more time: Peter Elias, MD and Regina Holliday.
The guest speakers and being able to interview health professionals were the highlights of my students’ class and I can’t thank all of you enough for your generosity! SPM rocks!
I could not have taught this course without the incredible knowledge and information sharing that happens in the SPM community. I am thanking everyone for sharing articles, information and ideas. In the following days I will share two posts written by two of my students: Cleo Kordomenos and Emma Streckenbein.
Finally, it was such a pleasure to interact with my students. They listened, learned, shared and were moved by every story they heard. They wanted to help and were thrilled to hear stories of the potential of new media to improve health communication. A number of them already had interactions with the healthcare system for themselves or through their parents and grandparents. While still on their parents healthcare insurance plans (thanks ACA!), they wanted to understand the system and felt they needed to know more.
There is a great need to teach basics of how the healthcare system works in US at the highschool/undergraduate level. Youth need to know how to read their healthcare plan, how to work with their doctors for diagnosis, treatment and recovery. They need to understand how to find out what things cost in healthcare. They need to be able to pick a healthcare plan. They need to know how to read medical research and how to make sense of health articles in the media.
I invite the SPM community to help me write a newsletter dedicated to teaching health communication and participatory medicine at all levels. If you do any health related teaching and if you would like to share your opinions about teaching participatory medicine, please email me at email@example.com before August 10, 2016.
A patient’s ability to choose the provider they want depends largely on information – same as any other choice, right? So this blog has long praised The Leapfrog Group for its deep analysis and publication of hospital quality and safety data, through its Hospital Safety Scores service.
Note that this isn’t just a “patient power” issue – if we don’t have this information, we can’t reward the hard working people who are doing a good job at their hospital. I point this out because whenever data like this comes out, most of what we hear from providers is “Our low score isn’t justified!” with hardly anyone praising the excellent. Let’s do that!
As everyone knows, there’s garbage on the internet, in addition to the gold. For many examples of the gold, see the extraordinary comments on our Google mug post, one of our most productive posts ever.
As for the garbage, twice this month I’ve been approached by a classic untrustworthy scam site, juicy enough that they deserve to be used as an example: BrightBod.com. They exhibit all the classic signs of what e-patients should avoid, starting with the fact that you can’t get a straight answer from them about “Who am I talking to?”
Here’s my email thread with them, first about kidney cancer weeks ago, and now repeated about brain cancer. Their emails come from a generic gmail account (not from @brightbod.com), their website doesn’t identify who’s behind it, and they will not answer questions about who funds them. TOTALLY sketchy. [And in a comment below, it turns out they’ve even concealed who owns their domain!]
Voting ends Sunday July 31
Patient activists who attend conferences know that it’s been a long climb to get patient voices welcomed. The #PatientsIncluded movement has been around for years, making small dents, but Health 2.0 is one of the best: while they don’t provide stipends to cover travel costs, they
- admit patients and caregivers to the full conference free, even if they’re not speakers.
- have had patients on the main stage (not just in breakouts) since 2008(!)
- since 2010 have added a Patients 2.0 pre-conference, coordinated with our Society, most recently through Past President Sarah Krug of Cancer 101. (Plans aren’t set yet for this year but we do know there’s an informal SPM reception.)
- Oh, and for years they’ve been corporate members of our Society. But that’s not what this post is about.
I’ve been to lots of conferences, and when patients are in the room the difference is palpable. It matters.
Peter Elias MD (in photo at left) is a member-at-large on the board of our Society for Participatory Medicine. See his earlier posts here. Particularly relevant is his Proposal for a TRULY patient-centered medical record, The experience he recounts here, as a caregiver of a family member trying to partner with her providers, fell far short of that vision of true patient-clinician partnership.
There is much to learn here, from the comparison. Current portals were developed to meet Federal reimbursement guidelines – whose requirements were negotiated downward to make reimbursement easier. What can we do, to move beyond this state?
I recently spent nearly a week at the bedside of a hospitalized elderly relative. After discharge, I used the Partners HealthCare portal to notify my relative’s PCP. I gave a very brief (one paragraph) summary of the presentation and hospital course, some pertinent lab and x-ray values, her changed discharge medication list, her status at discharge, the discharge plan, and the 2 items needing follow-up.
I got a prompt and constructive reply from her PCP, which is great.
Not so great was the fact that, because of a 1500 character limit, I had to divide my information into three separate messages. Fifteen hundred characters is less than 11 tweets, and represents a very significant barrier to the quality and safety of clinical communication between patient and clinician.
I provided this feedback to the organization and was told the “…character limit was requested by the clinicians within Partners Healthcare…was set by the development team per the decision of the executive clinical team members.”
They did not comment on my suggestion that if the character limit is important, it should be possible to attach either a text or Word document to a message. (Their system allows only image formats.)
I find this very disappointing. The implication is that the clinicians at Mass General, the Brigham, McLean and others do not really want to allow patients to provide useful clinical information. They want to receive postcards rather than letters, which is the online version of interrupting the patient after 18 seconds. It’s like saying to patients: “I’m really not that into you.”
The institutions that use the Partners Healthcare gateway include:
Brigham and Women’s Hospital
Massachusetts General Hospital
Brigham and Women’s Faulkner Hospital
Cooley Dickinson Hospital
Martha’s Vineyard Hospital
Nantucket Cottage Hospital
North Shore Medical Center
Partners Community Healthcare, Inc.
Partners HealthCare at Home
Spaulding Rehabilitation Network
From my perspective, the root cause of this communication #fail is that portals are generally built without much input from patients and are designed to qualify for financial rewards by meeting CMS metrics, rather than designed to meet patient needs.
SPM member Danny van Leeuwen is @HealthHats on Twitter.
Last week I attended the American Academy of Communication in Healthcare (AACH) Conference in New Haven – 2016 ENRICH Healthcare Communication Course and Research Forum at Yale, entitled, Diverse Voices, Common Vision: Fostering Effective Healthcare Communication through Inclusion.
The AACH is the professional home for all committed to improving communication and relationships in healthcare. About 200 people attended from US, Canada, Israel, Brazil, Belgium, Australia. Although most attendees were physicians, I met nurses, therapists, coaches, office managers, patients, sociologists, medical students, and researchers. A couple of very low-key sponsors but no vendors present. A pleasant relief.
The conference was designed to maximize interaction, learn from each other, and build skills within work groups and special interest groups. Met several venerable experts. Very open and quite humble: “We have a lot to learn. Especially about patient centeredness.”
A new article in our Journal of Participatory Medicine explores an area that apparently has had no prior literature: the effect of gardening on how well stroke patients engage in their care. From the abstract:
Five main themes were identified from interviews and diaries:
1) the positive experience of nature,
2) therapeutic gardening as a protected self-expression space,
3) contact with nature as a boost for self-efficacy,
4) the plant as a catalyst of the patient-therapist relationship,
5) therapeutic gardening as a bridge between the hospital environment and the outside world.
Post-stroke patients who engage in therapeutic gardening perceived it as a way to foster their active role in medical care, enabling a proactive and positive attitude towards disease management.
Regular followers of this blog know for years we’ve been hot on the trail of the never-ending search for truth, justice, and please some reliable advice on medical matters. Tonight a google alert alerted us to the next round, the next attempt: a column by the ever-vigilant John Lynn at EMR & EHR (see screen capture below), who spotted the news that once again Google is doing its best to upgrade what you get when you google a symptom – a noble pursuit.
As always I googled the story about Google, and found this USA Today story.
Yes, upgrading search results is a noble pursuit. Yes, I like the idea of having someone curate search results so that what comes up is better than random chance.
But there are so many potholes on the road seeking certainty. In the interest of time, since I’m speechwriting tonight, I’ll paste in here what I said in the comments, which is a partial list of what we’ve said here in the past:
This may be THE most important, articulate speech I’ve seen about profound progress in patient power – and why it matters.
This talk by Mark Wilson about OpenAPS, at last Friday’s DiabetesMine D-Data ExChange 2016, contains a metaphor that’s just brilliant, explaining why patients would want to do this. Below the video are a few words for people who don’t yet know what OpenAPS is. (Thank you to Hugo Campos for highlighting this on his Facebook last night – patients spreading the word!) Twenty minutes plus Q&A.
The #OpenAPS movement (Open Artificial Pancreas System) is exploding with articulate patient voices. On this blog we posted twice about it last month from the Quantified Self Public Health event in San Diego and the O’Reilly #OSCON Open Source conference (two talks by Dana Lewis) and last week at the American Diabetes Association conference in New Orleans, for my own blog I interviewed Dana and co-creator Scott Leibrand, and finally met OpenAPS pioneer Ben West … I need to get clear on who did what when!
Industry observers, notice: this is a great big live specimen of what patient experience looks like when patients take the wheel. And notice that it’s not just about a more pleasant “drive” – they’re getting measurably better clinical results.
Eight years ago at the 2008 Connected Health conference in Boston, internet visionary Clay Shirky said “The patients on ACOR don’t need our permission and they don’t need our help.” I never would have imagined that it would go this far, but here we are.
This is patient power, for better health,
enabled by access to information.
Our Society defines Participatory Medicine defines it as “a movement in which networked patients shift from being mere passengers to responsible drivers of their health.” When we wrote that we didn’t have exactly this “driver” metaphor in mind, but it’s perfect. Power to the people – the people who have the need.
A side note on production of this video: I don’t know how this video was produced, technically, a composite of three frames showing the speaker and the slides and the full room, but I love it and I want it! Below the video on YouTube it says “Thanks once again to Amy Tenderich, Howard Look, Brandon Arbiter, Mark Wilson & the Nightscout Foundation for their participation in bringing this broadcast to you. We would also like to thank Ben West, Dana M. Lewis, Scott Leibrand, Chris Hannemann & Nate Racklyeft for their monumental efforts in the OpenAPS community.”