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The SPM Newsletter is an important communication mechanism. The goal of the Newsletter is to inform members about current events, provide updates on SPM activities, and share news felt to be relevant for members and supporters. The Newsletter Editor plays a critical role in leading and steering this effort. The Editor is a voluntary position, working with the volunteer Newsletter Team.

Editor responsibilities include:
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Most Recent

Our Journal of Participatory Medicine: an update, current metrics, how you can help

JoPM logo
SPM president Joe Ternullo, formerly of Partners Healthcare, sent this letter to our members this week. It will also be posted as an editorial on the Journal’s site.

Our Journal, begun as a grass roots initiative at the Society’s formation, is a crown jewel. It was the first peer-reviewed publication to focus exclusively on patient empowerment, and was created as a beachhead to establish participatory medicine as a legitimate area of academic pursuit. Volunteer editors-in-chief Charles Smith, Joe Graedon and Terry Graedon (and the late Jessie Gruman) have been steadfast and have expertly run the Journal.  Accomplishments include:

  • 227 articles published  
  • 7,000 visits to journal website monthly
  • 10,000 pageviews monthly
  • 21 articles currently in review

What accounts for the Journal’s success?  What are the needs?  How can you get involved? What are the benefits of involvement? 

Success: It is all about great people!  Authors have continued to submit high quality, relevant and timely topics while the Journal’s team of committed professionals have been persistent in quietly and competently ensuring that precepts of participatory medicine are diffused to advance care and improve lives. read more…

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Shared Decision Making in Imaging: How Should Patients and Physicians Discuss the Costs of Care?

The Society for Participatory Medicine is pleased to announce that we will be partnering with the American College of Radiology to present an important topic in healthcare at the next Learning Exchange, which will take place on April 19, 2017, 2-3PM EST.  Join us as we share tips, data and best practices that can empower you to make informed decisions as you discuss and understand the relative benefits and costs of diagnostic imaging.  Pre-registration is required and you can sign up here. Please also spread the word, as this is open to the community!


Matt Hawkins, MD, Pediatric Interventional Radiologist, Assistant Professor, Emory University School of Medicine

Sarah Krüg, Exec Director, Society for Participatory Medicine; CEO, CANCER101; Founder, Health Collaboratory

Emmy Ganos, PhD, Program Officer, Robert Wood Johnson Foundation

Jennifer Coleman, MHSA, FACHE, CMM, Executive Director, Grand Traverse Radiologists

Andrea Borondy Kitts, Lung Cancer & Patient Advocate, Consultant, Lahey Hospital & Medical Center, The University of Connecticut Health Center

What is the Learning Exchange?

We are each individually advancing the participatory medicine movement in our day-to-day lives and interfaces with healthcare and/or our work. Understanding the work we are conducting within our individual silos can help us learn from one another, allow us to build upon ideas, forge collaborations, provide a forum for feedback and suggestions, and hopefully avoid duplication of efforts. Helpful tips and best practices we’ve adopted as we navigate the healthcare system can also be beneficial to others. The SPM Learning Exchange is a forum launched in 2016 to help us learn from one another and capture the work underway within participatory medicine under one umbrella.  If you are interested in presenting your work, best practices or tips during a future learning exchange, please submit here. If you have any questions, please contact sarahkrug@cancer101.org

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“Words that annoy, phrases that grate”: BMJ Patient Panel post & tweetchat

We’ve written often here about the BMJ’s leadership on not just listening to patients but looking at healthcare from the patient’s perspective. Their patient partnership campaign, launched in 2014, includes a patient advisory panel that works actively to consult with the editors on several projects, and ongoing discussions lead occasionally to editorials (such as last month’s on the tricky issues of industry support for patient organizations) and blog posts.

A new post has just gone live, and will be accompanied by a #BMJdebate tweetchat next Thursday, April 13, at 5 pm GMT, noon ET, 9 am PT.  The subject is a hot one for many patients and patient voices: Words that annoy. Phrases that grate.

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Prepare for NEJM’s major web event on sharing research data next week

In November we posted about an extraordinary development: NEJM Data Analysis Challenge: can others create value by seeing researchers’ data? The project has come to fruition, and the big event (free) is next Monday-Tuesday. The question for us: What’s the impact on patients?

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Research & drug development news: European Public Health Alliance joins Europe-wide challenge to patent for Hepatitis C treatment

An announcement today in Europe (press release below) brings a new angle to the copious US coverage of drug pricing, such as predatory pricing of the EpiPen and the smirking, seemingly sociopathic Martin Shkreli. For the drug described below, the Médecins du Monde (Doctors of the World, below) blog says, “While [this drug is] a major therapeutic advance, the molecule itself, which is the result of work by many public and private researchers, is not sufficiently innovative to warrant a patent.”

That touches on another hot topic in the US: the use and re-use of data from government-funded research – whose data is it? Who owns the intellectual property? That’s what Vice President Biden spoke about (my video) at Health Datapalooza last year, and it’s at the core of the New England Journal’s SPRINT Data Analysis Challenge, which we blogged about last fall – its winners have been announced and there will be a free live two-day web event April 3-4 in Boston. That challenge arose out of a controversial editorial that said some people consider data sharing to be a “parasite” problem.

Whose data is it? Whose IP is it? What are the rights of investors vs the people who have the problem, aka “patients”?

Brussels,  27 March 2017

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Service Agreements Among Friends and Colleagues

I’m an old hippie [left]. I’ve lived in many houses and on a farm (commune?) with other people. Regularly we heard, “I agreed to what? No I didn’t.” “Since when is that a rule?”

I, and then my wife and I, developed skill in clarifying expectations and accountabilities: much effort invested to reach consensus, always worth it.

Later, in my work life as a healthcare leader, I tried to use service agreements between departments to clarify expectations and accountabilities. It was often resented and seldom reciprocated. 

Now, as a person with growing and seemingly unmanageable pro bono participation in volunteer and not-for-profit organizations, I try to do the same.

Service agreements set boundaries, which can be especially important for someone who’s managing a chronic condition. The details may vary, but they generally contain:
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e-Patient perspective on evolocumab (that new cholesterol study): beyond the headlines

Please cite this post as “by Dave deBronkart, Marilyn Mann and Peter Elias MD” or, on Twitter, “@ePatientDave, @MarilynMann & @PHEski.” Our blog software only allows listing one author but they provided 2/3 of the content.

The medical news is abuzz – and your newspapers will be abuzz – with coverage of a study released Friday. Understanding it properly requires several things that we’ve blogged about here in the past, not least of which is understanding statistics, especially these key points:

  • Avoid relative risk reduction (headlines about percentages)
  • Look instead for actual (absolute) numbers of patients helped
  • Figure out the NNT – the number needed to treat. It’s the number savvy people look for.

I’m not involved in cardiac issues, so I first heard about it on ABC’s evening news, where, sure as you’re born, all they talked about was relative risk: “lowers the risk of heart attack, stroke, etc by 15-20%.” That’s good news, of course, but you can’t tell how good it is unless they dish up the absolute numbers. (For example, a study of 1000 patients on a new drug could show a 20% reduction in relative risk from 5 to 4 patients or from 50 to 40. Both are 20% reductions, but there’s a tenfold difference in how many were helped!)

The graphic above is from the company’s press release. Surprise: relative risk! What if that’s all a news outlet reads? Will their coverage be what you need? (Plus, some news outlets also post the company’s press release as is, like this. Consumer beware!) read more…


“Inviting the patient’s perspective” paper: today’s needs, 25 years ago *this week!*

March 1, 1992.
25 years ago.

Yesterday I asked When was “Enriching the relationship by inviting the patient perspective” published? The words in that paper’s abstract [right] could have been written today – literally every word. It was printworthy a quarter century ago Wednesday, and it still is today.

Why? It’s appeared here repeatedly: despite the scientific nature of medicine, facts don’t change practice. Something else is needed. And that’s a problem.

You see, participatory medicine is, above all else, a cultural movement, even more than a medical movement. We’re here as an activist organization, committed not just to talking about change but to creating it. So when facts are presented so healthcare could improve, and it doesn’t – the world doesn’t budge – it may be fine to consultants (they can sell reports about the lack of change), but to us it’s not.

Trillions of dollars spent, and it hasn’t changed. And it’s not just the abstract that’s still true today – here are more excerpts:
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Quiz: When was “Enriching the relationship by inviting the patient perspective” published?

Do not go look this up. I’ll post the answer tomorrow.

We on this blog know Dr. Tom Delbanco as, among other things, the “father” of OpenNotes, along with “co-parent” Jan Walker, RN MBA. (For a history lesson, Tom’s also the lead author on the wonderful 2001 paper “Healthcare in a Land Called PeoplePower,” which I wrote about on my personal blog)

Your quiz: (Do not go look this up – THINK!)
When did he publish
the article whose
summary is shown here?

I’ll post the answer tomorrow, with the original paper. Please do think about this before searching.


Here’s the summary at right, broken into paragraphs to help you savor them. When was this written?

Doctors and patients alike are saddened and angered by the distance that increasingly interferes with their interactions.

Two complementary strategies may enhance the human quality of clinical care and improve outcomes.

First, the doctor and patient can undertake a systematic “patient’s review” that addresses seven dimensions of care:

  1. respect for patient’s values, preference, and expressed needs;
  2. communication and education;
  3. coordination and integration of care;
  4. physical comfort;
  5. emotional support and alleviation of fears and anxieties;
  6. involvement of family and friends; and
  7. continuity and transition.

[Pretty good list of aspirations, yes?]

Second, using survey instruments designed to solicit focused reports from patients that address each dimension of care, doctors can gather aggregate feedback about their practices.

Such reports move beyond anecdote and can serve as screening tests that uncover areas in doctors’ practices that merit improvement.

In addition, patients can join doctors in developing solutions to problems uncovered by patients’ reports.

–See you tomorrow …


Dell Medical School and the Future of Care

In 2009, along with several physicians, patients and health activists, I helped form the Society for Participatory Medicine, a nonprofit promoting “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.” I was drawn into discussions about the transformation of healthcare by the late Dr. Tom Ferguson, whom I met at a 1980s meeting of the Austin Writer’s League, where he was presenting about his publication, Medical Self-Care.

Tom was a physician, with degrees in Creative Writing, and medical editor of CoEvolution Quarterly, a descendant of the Whole Earth Review and the one periodical I read cover to cover.

The next time Tom and I met, around 1992, I was an early evangelist for the Internet, and forward-thinking Tom could see how access to the global network could empower patients to be more actively involved in their own treatment, and in the cultivation of knowledge about diverse health conditions.

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