Guest post by Hugo Campos; introductory note from Society for Participatory Medicine president Nick Dawson
Every movement evolves. And as a grassroots social justice movement, the Participatory Medicine Movement is also growing, changing and evolving. Something I’ve learned about myself is how uncomfortable I get when I’m on the edge of learning or gaining understanding. For the past few months, I’ve personally been uncomfortable with some of our terms, definitions and approaches to participatory medicine. To be clear, I don’t know what the future of the Movement is — and would suggest none of us alone has that complete vision.
SPM started in 2009 by redefining the patient’s role to emphasize autonomy. Like any project, we’ve had scope creep; talking about cooperation, ethics, and the now over-covered conversations about patient satisfaction and costs of care. This is not enough. Autonomy and emancipation are totally different issues from “satisfaction” and what things cost. Our goal ought not to be to make ourselves look like everyone else – our goal ought to be to establish what’s missing, what the problem is, and to fix it.
Healthcare providers who are tracking patient experience and patient satisfaction, take note: a new study reported yesterday in Science Daily provides evidence that we patients really like it when we can view the data you collected about us.
Even us over-50 ones, who are widely believed to be technologically not up to the task. (Fans of patient autonomy, like SPM member Hugo Campos, will like this too.)
Read the whole piece in Science Daily for more specifics, but here are a couple of hot spots worth circulating widely:
Cross-posted from my own site. This is about a free, non-commercial event that’s intended to be a radical exploration of a new way to discuss participatory thinking with people who don’t live in health policy circles – ordinary citizens!
For years I’ve been saying that this movement won’t really be creating change until it gets out of the conference world and reaches Main Street. (Often I say we won’t really be getting there until the people you meet at the grocery story know what we’re talking about.)
So you can imagine how thrilled I am that Brown University in Providence, R.I. is supporting a first-of-its-kind grass roots event next Monday night, attached to a session I’m teaching the next day for one of their courses.
We’re playing with the idea of tying this to “how superheros got their superpowers” – the so-called “origin story,” like Peter Parker and his radioactive spider – to help people see that they may be capable of more than they realized. And in that context, we realized we have three different types of “superpatients”, who will present:
Most of the people I meet in my voyages ’round healthcare system transformation, grassroots edition, arrived at the portal of #epatient via a trip through the medical-industrial complex. Either they, or someone they cared for, wound up getting “a thing” – cancer, Parkinson’s, multiple sclerosis, player to be named later – and they found themselves inside the medical care delivery system, bewildered, and looking for answers.
In short, most – not all, by any means, but most – are over 40.
Imagine my surprise, and delight, when I was sent a report on a survey conducted with 385 randomly selected patients across the US*, with most of the responses coming from 18 to 35 year old millennials (people born 1982 and after). The survey asked them their opinions on shared decision making, open notes, and shared medical visits, three new medical practice models that are rising in adoption.
Here’s the context of the survey questions:
- Shared decision-making involves the doctor and patient evaluating multiple treatment options and deciding together on the best course of action.
- Open notes is a policy allowing patients to view the medical notes doctors take about them during visits, which includes accessing those notes from home.
- Shared medical appointments, or “group visits,” involve attending an extended (60- to 90-minute) medical appointment with 10 to 15 other patients and one or more physicians.
The Commission on the Status of Women (CSW) was established by the United Nations Economic and Social Council (ECOSOC) in 1946. It is the principal global policy-making body dedicated exclusively to gender equality and advancement of women. The active participation of non-governmental organizations (NGOs) is a critical element in the work of CSW. NGOs have been influential in shaping the current global policy framework on women’s empowerment and gender equality: the Beijing Declaration and Platform for Action.
On November 3-5, at the United Nations in Geneva, I was invited to speak in the Geneva NGO Forum –Beijing +20 Un ECE Regional Review which focused on gender equality in all spheres of life. The five areas of priority in the NGO CSW agenda include:
o Women’s Rights Peace and Justice
o Women’s Economic Empowerment and Employment
o Displacement and Migration
o Women’s Health and Education
o Violence against Women & Girls
I participated in the Women and Health interactive roundtable, representing The Global Alliance for Women’s Health (GAWH) a non-governmental organization (NGO) in Special Consultative Status with the United Nations Economic and Social Council and committed to advancing women’s health in all stages of life and at all policy levels, through health promotion, education, advocacy, and program implementation.
Susannah Fox, long one of our most popular and prolific bloggers, is roaming to wider audiences these days. She’s entrepreneur-in-residence at Robert Wood Johnson, she has her own site, and she’s just started writing on the hip-hip site Medium.com.
We’ve long said that there’s nothing unique about being an engaged, empowered patient (e-patient): it’s a logical extension of just being alert and responsible for yourself. (That goes all the way back to our progenitor “Doc Tom” Ferguson being medical editor of the Whole Earth Catalog in the 1980s.
Well, Susannah’s finally found time to illustrate this big-time by posting about the time in 2011 at Dulles International Airport when, just after leaving the gate, the captain came on the intercom and calmly said they needed to evacuate. Down the slides. Because an engine was emitting smoke.
What happened will be a credible warning to any air traveler – and also to people who’ve had a rude awakening in a healthcare setting, where they discovered the need to keep their eyes open, keep their mind sharp, and think for themselves. Please go read it, and see if you can list (there or here) the lessons for e-patients.
Society for Participatory Medicine member Carly Medosch and her mother Mary Jo have run the Crohn’s and Colitis Foundation of America’s Fredericksburg, VA support group for the past 6 years. Crohn’s disease and ulcerative colitis are two forms of imflamatory bowel disease (IBD) – conditions with chronic or recurring immune response and inflammation of the gastrointestinal tract. There is no cure for IBD.
After becoming an unofficial local welcome wagon for people newly diagnosed with IBD, the Medosches decided it was time to start an official local group. Although the first meeting was attended by just three people (including the two facilitators!), the roster now includes over 40 people, some of whom drive over an hour each way to attend. Carly believes in the immeasurable value of finding people who understand life with chronic illness. She is honored to help facilitate a group that provides a safe space for so many patients and caregivers.
SPM member Casey Quinlan (who’s posting this) was invited to attend an event at the WHO in Geneva. This post originally appeared on her Mighty Casey Media blog, and is reposted here in its entirety by SPM request.
Guess who got invited to WHO? No, really.
The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation.
I spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them.
This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing.
By Nancy B. Finn
There has been so much discussion online and in the press about electronic health records and physicians sharing EHR data with patients via such tools as OpenNotes and Blue Button, that the personal health record (PHR) has been lost in the dialogue.
Wikipedia says “Participatory medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and … providers encourage and value them as full partners.”
That movement gets a big boost in credibility today: the Chief Residents at the Mayo Clinic have invited SPM co-chair “e-Patient Dave” to be their Visiting Professor in Internal Medicine next March. The announcement is being made today, during the patient panel at Mayo’s sixth annual social media summit. Here’s their post.
Their press release:
“A union of forces between providers and patients”:
Mayo chiefs name a patient as 2015 Visiting Professor