In a report released today (December 16, 2014), Consumer Reports shares insights from a survey of 1,200 people who were recently hospitalized. SPM is not surprised by the findings, which include the fact that patients who said they received respectful treatment by hospital clinicians reported fewer medical errors and better experiences in their hospital stays.
This could be a landmark that helps to shift the paradigm on hospital safety and medical errors, given that Consumer Reports is read by a much more diverse audience than is JAMA or NEJM or BMJ. Getting information on how to manage a hospital stay in front of patients and families *before* they get hospital treatment – information that isn’t just a procedure brochure from their surgeon, as helpful as that can be about the reason for the hospital stay – is critical to increasing patient safety.
One message that comes through loud and clear: engagement may be the buzzword, but accountability is the watchword, for both clinical teams and patients. We all have to participate. Which we can only do if we’re fully informed.
Reading through the report online, which we encourage everyone to do, serves up these key points:
A physician friend once shared his belief that the main product of a physician’s productivity is the diagnosis. Setting aside feelings about the notion of a work product in medicine, I’ve quite liked the simplicity of his distillation. The diagnosis is the economic enabler which leads to tests, prescriptions, treatments, interventions and counseling.
So, what happens when patients can make their own diagnoses with the same, or better, accuracy?
That’s the question Innovation Hub Radio tackles in this week’s episode:
Question: What do insulin pumps, at-home pregnancy tests, and space medicine have in common?Answer: They can be administered without a doctor, and they might be the future of medicine.
—Innovation Hub Radio, WGBH
The recent dialogue about autonomy on this blog suggests moving more tools into the hands of patients is something many SPM members see as desirable. Further, one of SPM’s founders and past president, Alan Green, is helping Scanadu build what’s being touted as the medical tricorder. So certainly, these kinds of hard questions are in our DNA.
To that end, what happens to the patient-physician dynamic when the patient, not the physician, makes the diagnosis? Are there limits, technology aside, to what should be diagnosed at home? What responsibilities to patients have to themselves and their greater community when a diagnosis is made at home? And, to my friend’s comment about work product, what role do physicians play for patients who self diagnose accurately in the home?
This post by long-time SPM member Michael Millenson first appeared on the EngagingPatients.org blog. We’re re-posting it here to both put it on the membership’s radar, and to invite comments on Michael’s POV that “As much as we can argue that patient engagement with their own healthcare decisions is progress, asking patients to keep doctors honest about the most basic medical practices is less a form of patient-centered medicine than a tacit failure of physician professionalism – and to an even greater degree a failure of medical management.”
The process of engaging patients in making care safer should be seen through a Santa Claus lens. It can be naughty or nice, depending not on good intentions but on the specifics of the intervention.
Rapid advances in the technologies giving scientists the ability to analyze, understand and identify the unique characteristics in the genome of every human being are now being translated into clinical applications that are actually prolonging the life of many individuals afflicted with a variety of diseases. This was evident at the 10th anniversary of the Personalized Medicine Conference, sponsored by Harvard Medical School and Partners Healthcare recently.
The presentations focused on the great strides that have been made since the conference began a decade ago, when conference participants were talking about possibilities that genome sequencing might offer, along with the high costs associated with this technology.
It was evident this year that those possibilities have evolved into concrete clinical applications that are saving the lives of patients with complex conditions, particularly in the field of oncology. It was also apparent that the costs, which were a prohibiting factor just a few years ago, are lining up to make this technology not only feasible, but realistic.
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.