#epatient – Are Millennials Born That Way?

Reposted from the Mighty Mouth blog

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.
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Digital Technology in Health and Participatory Medicine Recognized in UN Forum



UN Geneva.2cropped-NGO-Forum-B+20-Banner-website-revised22mai-2[1]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.

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Count the e-patient takeaways: “What I learned going down an emergency slide”

Screen capture of emergency slide postSusannah 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.

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Inaugural Emerging Leader Award from CCFA- DC Chapter for Carly Medosch

(photo credit to Nikki Piner)

Carly Medosch (photo by Nikki Piner)

Society for Participatory Medicine member Carly Medosch and her mother Mary Jo have run the Crohn’s and Colitis Foundation of America’s Fredericksburg, VA support group for the past 6 years. Crohn’s disease and ulcerative colitis are two forms of imflamatory bowel disease (IBD) – conditions with chronic or recurring immune response and inflammation of the gastrointestinal tract. There is no cure for IBD.

After becoming an unofficial local welcome wagon for people newly diagnosed with IBD, the Medosches decided it was time to start an official local group. Although the first meeting was attended by just three people (including the two facilitators!), the roster now includes over 40 people, some of whom drive over an hour each way to attend. Carly believes in the immeasurable value of finding people who understand life with chronic illness. She is honored to help facilitate a group that provides a safe space for so many patients and caregivers.

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WHO in Geneva – SPM in the house!

SPM member Casey Quinlan (who’s posting this) was invited to attend an event at the WHO in Geneva. This post originally appeared on her Mighty Casey Media blog, and is reposted here in its entirety by SPM request.

Guess who got invited to WHO? No, really.

The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation.

WHO_signsI spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them.

This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing.

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What has happened to the Personal Health Record?

By Nancy B. Finn

There has been so much discussion online and in the press about electronic health records and physicians sharing EHR data with patients via such tools as OpenNotes and Blue Button, that the personal health record (PHR) has been lost in the dialogue.

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Mayo chief residents name SPM patient as Visiting Professor in Internal Medicine

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

That movement gets a big boost in credibility today: the Chief Residents at the Mayo Clinic have invited SPM co-chair “e-Patient Dave” to be their Visiting Professor in Internal Medicine next March. The announcement is being made today, during the patient panel at Mayo’s sixth annual social media summit. Here’s their post.

Their press release:

“A union of forces between providers and patients”:
Mayo chiefs name a patient as 2015 Visiting Professor

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WSJ: “Researchers are asking patients to help design clinical trials.”

I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference (the “European ASCO” cancer conference) in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with patients as active contributors to improving healthcare. Woohoo!

The lede:

Scientists regularly sign up patients in clinical trials to test new treatments. Now, they are seeking patients to help them design some of those trials.

Patients and researchers can bring different perspectives to treating disease …

Screen capture of Wall Street Journal

It seems clear that medicine is starting to act on the Institute of Medicine’s mandate in Best Care at Lower Cost:

A learning healthcare system is anchored on patient needs and perspectives.

Doesn’t this dovetail deliciously with the presentation I blogged about on my own site, on involving patients earlier in the research process?? Imagine: Scientists asking patients what they think is important!

Clearly, science is starting to act on the realization that patients are no longer the passive beneficiaries of what scientists think.  (It also matches nicely Laura Landro’s front page WSJ piece in June, “Health-Care Providers Want Patients to Read Medical Records, Spot Errors”.

This is a major shift in the wind, and it’s spreading. Watch for more of this in the coming months.

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Remembrance in New York: “Jessie Gruman, the Force”

Yesterday at the New York Academy of Medicine was the first of Jessie Gruman’s two remembrance events, which we blogged about. Here’s a view of the gathering, which was followed by a reception.

Jessie's gathering 10-5-14 at New York Academy of Medicine

Jessie’s gathering 10-5-14 at New York Academy of Medicine

It was a fitting, moving, great tour through her life, with short talks by many people who knew her: Jessie the Child, Jessie the Adolescent, Jessie in Israel, in New York, at CFAH, Jessie the Patient, the Advocate, the Traveler, the Sister, the Friend. And Jessie and Richard (Sloan), her soul mate and husband of 34 years; and the last, titled “Jessie, the Force.”

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New on JoPM: “e-Patients Never Retire”

Screen capture of article headlineToday in our Society’s journal, SPM co-founders Joe and Terry Graedon of PeoplesPharmacy.com posted something I couldn’t agree with more:

e-Patients Never Retire

That’s kinda by definition, eh? But there’s an uppity Sixties edge to this, and with this too I couldn’t agree more.. Excerpt:

Older patients have something to tell their health care providers: look at me; listen to me; and speak with me rather than to the person who may have come with me to the visit. Gray hair doesn’t signal senility.

What’s your experience been? Have you met up with doctors, nurses and office staff who could use a wake-up smack on the side of the head?

Of course I recommend first saying courteously how you’d like to be treated: be self-aware and be empowered: speak up and say how you’d like to be treated. And physicians and staff, realize: a generation ago 80 may have often seemed “feeble,” but not so much, anymore.

The times, they are a-changin’!


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The diverse nature of patient communities: a prostate cancer patient’s experience

On my own site I have a (loose, rough, poorly managed) list of patient communities, gathered ad hoc, as time allows. Today I posted a new contribution of a different sort – the experiences of a prostate cancer patient I met at a speaking event last week in Vermont. He’s involved with three different communities, and his insights about the differences are useful.

The diverse nature of patient communities: a prostate cancer patient’s experience

Should SPM develop and maintain a list like this?  Who would do the work? Heaven knows my list is disorganized and needs housekeeping – I’d be glad to have someone do a better job of it!



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