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OpenNotes hits TEN MILLION patient level

OpenNotes healthcare IT news screen captureAs regular readers know, for years we’ve been blogging here about OpenNotes, in which patients and their designated caregivers can read every word their clinicians write, so they can be more informed. The OpenNotes tagline, “Doctors and patients on the same page,” is no joke: I was one of the subjects in the study, and I’ve blogged about visits with and without OpenNotes. With is better.

I mean, would you hold any other kind of important meeting in life with no access to the records of what happened, what was decided, and who’s going to do what??
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How can we cope with uncertainty?

Uncertainty in medicineWe’ve written often about uncertainty, which is a recurring challenge in medicine and especially in participatory medicine, where issues of relationship and decisions are core.

Some doctors have told me they were trained to display certainty even when things aren’t sure, and many patients (in my experience) want certainty about their diagnoses, or at least want their clinicians to act confidently.

But our board member Peggy Zuckerman also serves on the patient engagement committee of our “cousin” the Society to Improve Diagnosis in Medicine, and as she said on NBC last year, diagnosis ain’t always easy. And when things don’t work out well, patients can feel wronged and clinicians can be blamed.

I wonder, what if we could all accept uncertainty and cope with it together?

An article on uncertainty last month in The Skeptic discusses the reality. On Facebook our board member Peter Elias MD called it “a fine and pretty comprehensive review of how much uncertainty there is in medicine.” Here’s the first part, with some added returns for easier reading: read more…

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e-Patients as journal authors: Sean Ahrens self-experiment published in a major journal

Sean Ahrens article in American Journal of Gastroenterology

We’d love to start a list of other patient-authored papers and posters – let us know in the comments! We know of Dana M. Lewis & Scott Leibrand’s poster about #OpenAPS in June – who else??

We’ve written before about e-patient Sean Ahrens and the Crohnology community he started.  In my view the most important post of the series was four years ago: Crossing a threshold: the e-Patient movement enters wave 2. That post linked to an article in Fast Company (a business magazine!) about Sean.

Now, could this be wave 3? We’re starting to see e-patients as authors in medical journals. That is a culture change, folks.

In this case it’s not just an opinion piece – Sean devised and conducted an experiment on himself! Here’s his Facebook post the other day on it:

So I think this is kind of big news: I just got published (in print) in a major medical journal, the American Journal of Gastroenterology (AJG)!

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Cleo Kordomenos: How My Opinion on Online Health Communities Changed

Cleo KordomenosThis is a guest blog post by Cleo Kordomenos. Cleo was my student in the New Media and Health Communication class I taught at TCNJ. More about the class is shared in this post. 

Cleo Kordomenos is a Senior Communication Studies student at The College of New Jersey with a concentration in Health Communication and a minor in Public Health. After completing her undergraduate degree, she plans to pursue a Master’s in Public Health, specializing in Health Policy and Management. Currently, she is working at the Children’s Hospital of Philadelphia doing research for CHOP’s Center for Injury Research and Prevention. Outside the classroom and the office, you can find her enjoying time with her family and friends by the beach, hiking, biking, and cooking.

I entered my New Media and Health Communication course at The College of New Jersey opposed to the idea of online health communities as means of providing patient-centered care to individuals. You would think that as a 21-year-old, growing up immersed in technology, I would welcome the idea of utilizing the internet to create online communities.

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“Unmarried teens would jump off bridges”: NY Times on suppression of home tests

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.

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Teaching Health Communication with Participatory Medicine Highlights

IleanaBalcuHeadshotIn 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 before August 10, 2016.



New data from CMS insurance claims will empower consumer choice

Leapfrog CMS ratings correlation graphicA 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!

The news:

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e-Patient Basics: Avoid scams like

Brightbod scam graphicAs 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: 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, 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!]

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Health 2.0: first conference to offer Patient Activist awards. Vote!

Screen capture of Regina's Facebook postVoting 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.

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Peter Elias: a physician experiences a portal from the family side, and… #fail

Peter Elias with patient

Peter Elias working with a patient, from the SPM website

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
McLean Hospital
Nantucket Cottage Hospital
Newton-Wellesley 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.