Watch: Webcast – patient engagement from the patient’s point of view

Screen capture of the speaker's pictures

Slide of the speakers. To watch the replay, click the video below.

Yesterday super-e-patients Regina Holliday, Michael Seres and I spoke on a webcast titled “End-to-End Patient Engagement that Drives Loyalty and Outcomes,” hosted by Liz Boehm of Vocera.com’s @EINHealth Experience Innovation Network.

Frankly, we autonomous e-patients didn’t talk much about “driving loyalty and outcomes” – to us that’s self-evident. Instead we laid out our highly empowered views of what engagement is to us, and how and why healthcare so often doesn’t get it.

Fittingly, Liz set the stage by quoting famous e-patient Hugo Campos: “I don’t want to engage with the health system. I want to engage with life.”

Interestingly, we three speakers never got together to compare notes before the call – this all came out unscripted and unrehearsed. That’s why it’s such a great composite. And Vocera says audience feedback has been terrific. (Examples are pasted in below the video.)

Part of me wants to write a big post about what a great vision this turned out to be, but the video speaks for itself. I had slides, the other didn’t. Watch and/or listen.

Audience feedback

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BREAKING: SPM board member Peggy Zuckerman, on NBC Nightly News tonight (about diagnostic errors)

We’ll update this post as time allows, but: SPM board member (and my fellow kidney cancer patient) Peggy Zuckerman will be on the NBC Nightly News tonight (9/21). Look up the time for your local channel.

See also our post this month about her participation at the diagnostic errors conference, which is part of how this Nightly News item arose.

The program segment

Screen capture of Peggy Zuckerman on NBC Nightly News

Click to view the segment on the NBC site. (Peggy appears at 1:24.)

The segment is about a report released Tuesday by the National Academies of Science on errors in diagnosis. NBC Nightly News anchor Lester Holt calls it “a staggering new report about a dangerous blind spot in our healthcare system”: wrong diagnoses. The report says

  • 1 out of 10 patient deaths are affected by a missed diagnosis. (If the diagnosis is wrong, how can the treatment possibly be right??)
  • Every year about 5% of patients get misdiagnosed

Think about that next time you see a waiting room full of 20 patients.

The segment says the report has these recommendations:

  • Changing the pay structure for doctors, to emphasize the time spent with the patient.
  • Elevating the stature of nurses, who spend the most time with patients. (Many of us feel that nurses often do a better job of listening to us when we say something’s not right.)
  • Improve communication throughout the process. (Much easier said than done; this is a big change not just in how providers spend their time each day, but in the culture of who talks to whom and why.)

Note that NBC didn’t say a thing about the role of the patient – but Peggy does, wisely citing what you as an engaged e-patient can do.

Spread the word – tell family and friends about this. Remember, this report isn’t from some anti-doctor / anti-establishment protestor; it’s from the establishment – the National Academies of Science, Engineering and Medicine. This is an alarm from within the building, telling us to be careful and speak up.

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Guest Post by Mary Beth Schoening: a Definition of the Engaged Patient

This is a guest post by our member Mary Beth Schoening. Mary Beth is co-founder of Behavioral Health Innovators, Inc. an organization combining the power of human compassion with technology, Mary Beth Schoeningadvanced research and best practices from industry to encourage healthy behaviors.  As a digital health strategist, she has developed strategies and tools to engage both patients and clinicians, working with providers, medical device companies, pharma, biotech, HIT and global disease non profits. Mary Beth can be reached via Twitter @mbschoening.

My Definition of an Engaged Patient

…an engaged patient sees herself as the CEO of her health, and views her care team as advisors.  Her advisors will become trusted advisors when trust is earned.  The more trusted the advisor, the more impact they have on the care of the engaged patient.

The engaged patient

  • picks her team,
  • engages her team in the areas that are most critical,
  • prepares ahead for meetings,
  • manages schedules and finances,
  • encourages cross team collaboration when needed,
  • turns advice into action when it resonates, and
  • is the responsible, driving force for her successful health outcome over time, working together with her team.

Creative Commons – shareable with attribution, Mary Beth Schoening, Co-founder, Behavioral Health Innovators, Inc. 

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We’re all in this together

jeffrey halbstein-harris photo

Jeffrey Halbstein-Harris

A guest post from member Jeffrey Halbstein-Harris – this is a small slice of a longer piece he used as the basis for a speaking engagement.

This is a call to consumers: my brothers and sisters who rely on healthcare and its infrastructure’s support throughout their life.

I was leaving a meeting of healthcare policy experts (mostly insurance executives) two years ago after giving a talk on the adoption of health information technology by “patients.” The story I told was my own: a man who at the age of 56 had retired after nearly 34 years working in the industry and 48 years of living with type-one diabetes and associated co-morbidities.

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Sep 26 – Patient Summit on Diagnosis in Alexandria, VA

Diagnostic Error in Medicine 8th International Conference

To all in the Washington/Baltimore/northern Virginia area (and elsewhere if you care to travel!):

The patient committee of the Society for Improved Diagnosis in Medicine would like to invite you to our second annual Patient Summit on Diagnosis.

The summit is part of the pre-conference program of the Diagnostic Error in Medicine conference and takes place from 1-5:30 pm, Sat. Sept 26, at the Hilton Alexandria Mark Center in Alexandria, VA.

Admission is free. Speakers and panelists include three SPM members:

  • Leana Wen – the inspiring Baltimore Health Commissioner
  • Peggy Zuckerman – SPM board member
  • Helen Haskell – MAME founder .

The Jefferson Center of St. Paul, MN, will lead deliberations on developing national patient-directed strategies to help reduce diagnostic error.

Students, researchers, professionals and patients are all welcome. Register at www.improvediagnosis.org.

Thanks so much! We hope to see you at the patient summit!


All the best,

Helen Haskell, Chair, SIDM patient committee

Peggy Zuckerman, DEM planning committee


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The Medical Humanity of Oliver Sacks: In His Own Words

We science-medicine-poetry junkies, along with a sizeable portion of the world’s population, are mourning the death of Oliver Sacks, the neurologist and author who died last Sunday from metastasized melanoma. And as enthusiasts of Dr. Sacks’ catechisms on the soul of the patient, we turn to his own words of mourning, written over 40 years ago for his close friend, the poet WH Auden:

Wystan’s departure affected me like a sudden darkness, the eclipse of all light and reality from the world. I knew him to be a man mortally ailing, and when he left [the U.S.] I mourned his death in advance. I suddenly realized what I had never properly avowed before, that he had been a beacon for me, a reality-bearer, so that his departure subtracted reality from my world… and there is a Wystan-shaped space which will never be filled.

Being a New Yorker, I had the great fortune of hearing him speak several times, and to commingle with him at Cornelia Street Café in the Village, where the wonderful cultural series Entertaining Science took root over 15 years ago.

The opening paragraph of Michiko Kakutani’s New York Times essay “Oliver Sacks: Casting Light on the Interconnectedness of Life” wonderfully elucidates the gift of this renaissance medicine man:

It’s no coincidence that so many of the qualities that made Oliver Sacks such a brilliant writer are the same qualities that made him an ideal doctor: keen powers of observation and a devotion to detail, deep reservoirs of sympathy, and an intuitive understanding of the fathomless mysteries of the human brain and the intricate connections between the body and the mind.

Sacks quote 1a Indeed, as quoted in Salon’s fine tribute, Sacks nails the ‘patient-centric’ medical practice by invoking Dr. William Osler’s 75-character maxim: “Ask not what disease the person has, but rather what person the disease has.”

Sacks’ remembrance of Auden, quoted above, was published in a 1975 compilation of tributes edited by Stephen Spender, long out of print. The essay is remarkable because it captures the spirit of “medical humanities” – a field amplified by Sacks when he joined Columbia University Medical Center in 2007. As described in the PR upon his hiring, “Sacks becomes a one-man embodiment of the multidisciplinary scholarship that has been a priority of Columbia President Lee C. Bollinger… this exemplifies the University’s effort to bridge the gap between the study of neuroscience and other disciplines in which scholars work to understand human behavior, including economics, social science, law and the arts.”

That embodiment is crystallized in the tribute to Auden, with invocations of psychology, poetry, sociology, storytelling, medicine and more. And those very qualities that he so adoringly attributes to Auden can be transcribed to Sacks’ own obituary, as excerpted below.

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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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“We demand a medical record SPIGOT!”

We demand a medical record spigot!Please see my long-overdue post contributing to the @GetOurHealthData movement, on their blog.

The more I’ve thought about all the different issues around data transfer, meaningful use, APIs and everything, the more I’ve approached the inescapable conclusion that there’s only one answer: most medical record vendors say they’re paralyzed about this and too backlogged with other work, but we still have health problems to solve. So I say, we deserve a big freakin’ spigot attached to the EMRs, to just spew our data to us.

Not an endless series of “pretty please please give me my dying husband’s record, please” for an absurd amount of money (SPM pioneer Regina Holliday’s true story); a spigot so we just turn it on and it flows. To us – the people who have more need for it than anyone else, to manage our own and our families’ health.

I have many good friends in the health IT world who know many things about the difficulties of moving health data around. Fine: give it to us, in its raw form, and we’ll find vendors who can figure it out, if you folks in the industry can’t. Besides, I know you have a huge regulatory backlog of things you have to do – let us cope with the data; you just give it to us.

Give us a great big spewing medical record spigot. Give us our DaM data – Data About Me!


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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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Happy Birthday Medicare, Medicaid and Social Security


On July 30, 2015, Medicare and Medicaid will celebrate their 50th birthday. In August of 2015 Social Security, celebrates its 80th birthday.

Amendments to the Social Security Act (Title XIX) that established guaranteed basic health coverage programs for all elderly, low-income adults and children, pregnant women, and people with disabilities were signed into law on July 30, 1965, by President Johnson These often maligned, essential social programs supported with employee pay deductions and premiums from subscribers as well as American tax dollars have had a rocky existence over the past 50 years.

The growing and aging population, a shrinking workforce paying into the fund, the introduction of sophisticated medical treatments and technologies, the explosion of new high cost drugs and other dynamics have forced Medicare and Medicaid  into constant change  and reevaluation.

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Partnering with Patients – From Theory to Practice: #HealthcareTransformers

Three continents. Five patients. Three conferences.

Dramatic change is occurring in healthcare where patients, “the true trans­formers in care”, are changing the playing field, and redefining how they want to engage and affect change.

The Walking Gallery in Grantsville, MD.

The Society for Participatory Medicine is a non-profit organization devoted to promoting the concept of participatory medicine, 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.

The Society for Participatory Medicine created a patient travel scholarship in 2012 to help support the attendance of patients at health conferences to help move the needle in advancing participatory medicine.

Last month, five patients were awarded the opportunity to attend the following conferences:

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