New paper: “The Road to Making Patient-Centered Care Real: Policy Vehicles and Potholes”

Urban Institute paperSPM Past President Michael Millenson reports that the Urban Institute has published a paper he co-authored with Bob Berenson: The Road to Making Patient-Centered Care Real: Policy Vehicles and Potholes. Michael writes:

This is the most comprehensive look ever at the current state of patient-centered care activities that related to the actual clinical encounter. (Not included are research, such as PCORI activities; and regulatory activities, such as FDA outreach to patients.)

The paper examines the legislation driving change as well as, crucially, looking at the evidence in the medical literature and the measurement issues involved in turning patient-centeredness from ideal to real.

Bottom line, to me: when you tie patient empowerment to patient (as the new MACRA law is going to do with Medicare reimbursement, and as others are doing), providers will listen.

About the MACRA law: “On April 14, 2015, a large bipartisan majority in Congress passed the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA). President Obama signed the MACRA into law on April 16, 2015. The MACRA … establishes a new framework for rewarding clinicians for value over volume, and streamlines other existing quality reporting programs into one new system.”

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Misdiagnosis: A Chronic Condition Looking for a Cure

According to a report in the BMJ Quality and Safety Journal, each year in the U.S. approximately 12 million adults or 1 out of 20 patients who seek outpatient medical care, are misdiagnosed in a way that could cause severe harm.

These alarming statistics are further reinforced by a new study from the Institute of Medicine (IOM) published in September, 2015, which predicts that:
“most people will experience at least one diagnostic error — an inaccurate or delayed diagnosis — in their lifetime, sometimes with devastating consequences.”

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The e-Patient “e”s reach Japan!

e-Patient slide at Health 2.0 Japan

via Matthew Holt

As a social movement, we like to track the progress of the e-patient concept as it moves around the world. The e-patient message has been presented in at least fourteen countries that I know of. A few hours ago on Twitter, SPM member Matthew Holt, of the famous “Health 2.0” conference series, posted this photo of a slide from their first-ever Health 2.0 Asia-Japan. Thanks, Matt!

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Monthly introduction to e-Patients.net

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate.

Our publications:

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

Contact us:


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EHR? What is it good for?

Sara Riggare at Medicine X

Sara Riggare PhD at MedX

I live in a small country: Sweden has the population of Michigan on the land area of California, so you shouldn’t really have even heard of us. But I guess that ABBA, IKEA, H&M and the Nobel Prize sort of helps :).

Living in a small country of course has both pros and cons, and I will focus on the pros here. As a result of being a vocal ePatient in a small country, I am now involved in healthcare policy discussions on the highest levels and that is why I am posting here today, hoping for your help. I am trying to get a better understanding for the area of health IT, and especially electronic health records (EHR).

Could you help me with the following questions?

  1. What is the status of standards in the area of EHR:
    • In the US?
    • In Sweden?
    • In the rest of the world?
  2. What is the status of openEHR? Has it been implemented on a large scale anywhere?
  3. What would your dream EHR/PHR look like?

Guest posts for this blog may be submitted by members of our Society for Participatory Medicine. Guest post guidelines are on our Contributing page.

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Key legal victory moves medical device patients one small step closer to full access to their data

Hugo with "gimme my data" mugHugo with "gimme my data" mugFor whose benefit does the healthcare industry exist? For the investors, or the people whose needs are the reason for the industry?

Facebook last night was celebrating a small but significant legal victory this week for the “gimme my DaM data” movement (“Data about Me”), of whom super-e-patient Hugo Campos is a well known example.

Regular readers are well aware of Hugo’s odyssey (search his name on this blog) to get his hands on the data that’s gathered and emitted by the ICD (implantable cardioverter-defibrillator) that’s wired into his heart. For years he’s tried to get that data, but device maker Medtronic has said “Sorry, you’re not our customer. Your doctor is.” And, whether we like it or not, the vendor has a legal right to protect its patented and copyrighted designs and software.

The ruling, from the Copyright Office (under the Library of Congress), grants the plaintiffs (four “patient researchers,” including Hugo) an exception that allows them to circumvent that vendor’s “technological protection measures” that effectively limits access to copyrighted work, in this case the software that runs a patient’s medical device and the data it collects

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How can we achieve shared work, connection, and communication?

Speaker saying to audience "Who wants change? Who wants to change?"

Translated from the French at Quebec Meme http://qcme.me/ZGtJZGL

Peter Elias MD is a member at large on SPM’s board of directors. He’s a primary care physician in Maine who, when I first met him at a speaking event, said he’s always practiced this way but didn’t know it had a name – participatory medicine. He’s active both in our member community and in our executive committee’s biweekly calls. This post candidly addresses the challenges our society has faced, lays some facts on the table, and calls for action, with a kind of partnership we have not yet achieved. – Dave

The challenge of maintaining connections and good communication between membership and leadership has come up periodically since I joined the Society for Participatory Medicine in 2010.  This is not unique to SPM, but is a universal issue for volunteer organizations. Where SPM is unique and stands out is its willingness to openly discuss this, and work collaboratively towards solutions.

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Sure to be a complex controversy: “Concurrent surgery” (Boston Globe Spotlight series)

Screen capture of story from Globe home pageAh, the world of social media. This morning’s Boston Globe “Spotlight” investigative team (which won a Pulitzer in 2003) has this, citing local superstar hospitals Massachusetts General and its sister hospital, Brigham & Women’s. Within an hour the discussion got so meaty that I knew we had to move it here, because Facebook threads basically disappear in a week, and this needs to last. It has such implications for patient and family engagement, starting with just being aware of the realities of hospital business and how that affects the staff who will treat your family.

Should a surgeon run two operations at once, moving from room to room in the times when s/he isn’t needed in the other OR? It’s a splendid example of a complicated question in medicine, with (IMO) no clear answer, so don’t jump to a conclusion without reading and thinking (including the discussion pasted into this post).

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“When someone else speaks for you, you lose”: patient empowerment as a civil rights movement

Our Bodies Ourselves original coverHere’s something I’ve never done: I’m capturing a comment from this blog five years ago and making it a post of its own, so it’s easier to find, because I think this is going to be more and more of an issue.

It’s clearer and clearer that, as SPM board member-at-large Peggy Zuckerman says, patient empowerment is becoming a true civil rights movement. As in, I bet within a year or two we’ll see protests in the street, especially as governments begin to fight back, e.g. the Belgian government’s “Don’t Google it” Google Ad campaign(!). In recent speeches I’ve been calling that “the empire strikes back.” When that happens, it’s a sure sign that the dominant paradigm is failing, and is not happy about it. And they start trying to hold back the tide of democratization. (Update: see Peggy’s comment below about how this impacts both care and the conduct of healthcare.)

The comment below was in the context of our post “Equity & Excellence: Liberating the NHS” (UK white paper). It was a reply to another comment from SPM co-founder Gilles Frydman. An amazing set of historical references all in one place.

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VIDEO: How Patients are Helping Change Medical Journals: BMJ’s Tessa Richards at MedX 2015

Medicine X "Year of doing" graphicThere can be no question that Stanford Medicine X is, head and shoulders, the most patient-oriented medical conference in the world. Susannah Fox first wrote about it here in 2012 after the first annual event, and it’s gotten better every year. I agree with what she wrote about the event’s organizer, Larry Chu MD: “Larry appeared on stage on Day 3 in the same shirt worn by the volunteers, in their honor. Larry is the most thoughtful and generous person I know.”

In 2014 the BMJ (formerly British Medical Journal), one of the top journals in the world, announced its patient partnership. Last month BMJ Patient Partnership Editor Tessa Richards traveled to #MedX 2015 to share, in a short but powerful 12 minute speech, the specifics of the program. Here’s the video, and below are her slides.

It’s not just that the great e-patient awakening is happening and spreading; the highest levels of the medical establishment have endorsed the shift. In 2012 the Institute of Medicine wrote that the future of medicine must include “Patient/Clinician Partnerships” and explicitly said “Empowered, engaged patients.”

Her slides:

Please share this widely, especially if anyone expresses skepticism that the patient revolution is real.

Production note: Due to a mixup at the event, the wrong slides were displayed. Happily, SPM member Casey Quinlan (@MightyCasey) is a former network news geek and did a fabulous job of editing the video (and inserting the right slides!) to create this final edition. Thanks, Casey!

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Perfect @ADrane graphic on the misalignment of industry’s & patients’ perspective

From the Health 2.0 conference in Silicon Valley yesterday – the best tweet and slides EVER that illuminate the difference between medicine’s view of the problem and patients’ experience. SPM co-founder Susannah Fox took pictures of two excellent slide by @ADrane, Alexandra Drane:

Susannah Fox's tweet about Alex Drane's slides

Susannah Fox’s tweet about Alex Drane’s slides

Here are Susannah’s photos of the slides, blown up:

Alex Drane Health 2.0 2015 slide 1Alex Drane's Health 2.0 slide 2

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