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Democratizing Healthcare

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February 11, 2015 By e-Patient Dave Leave a Comment

New BMJ article: “From patient centred to people powered: autonomy on the rise”

Screen capture of the article on the BMJ site

I’m thrilled to say that the BMJ, formerly the British Medical Journal, has just released a new article I wrote about the “social movement” aspect of our work, including the rationale for listening to the patient perspective.

Intended for medical audiences around the world, it’s part of a big, 21-article multimedia “Spotlight” supplement that will be in Thursday’s print edition; it was all released online yesterday. Over on the e-patient blog I posted the full list of articles, including the names of other members of our Society for Participatory Medicine who are in this issue. Big participation, big visibility!

This supplement, appearing in one of the world’s top medical journals, may well be the biggest moment yet in the history of our movement. It’s got hours of reading and listening, with contributions from eight countries, if I counted correctly.

Those of you in my generation – the era of many social movements – will relate to the parallels with what’s happening today: a whole class of people whose voice has been considered “not worthy” is speaking up, demonstrating capability, and pushing back when we’re told to “stay in our place.” :-)

Is it time for a new scientific field?

[Read more…]

Filed Under: Best of 2015, Health policy, Leadership, Participatory Medicine, patient engagement, Patient-centered tech, Patient-centered thinking Leave a Comment

January 17, 2015 By e-Patient Dave Leave a Comment

Opening the ICU doors to family: report from Virginia Mason

Screen capture of article top
Click to view article PDF (open access)

On Twitter tonight I learned from Dr. Sachin Jain of a November article that should be of interest to all of us who want to work toward full patient and family engagement in all aspects of medicine. To be sure, the changes we’d like are not always simple, and one example is expanding family access to the ICU.

Virginia Mason Medical Center (VMMC) is widely known for being far far more patient-centered and quality-oriented than most medical institutions – including, in this case, even the really challenging parts.  I hope I don’t get in copyright trouble for pasting too much in here, but the whole article is Open Access (no charge) so have a look, under the heading “Problem: Despite tradition, genuine need to open doors”:

Over time we became more aware that this traditional model was badly disconnected from the needs of our patients. The Institute of Medicine emphasized that families serve as a healing influence by providing comfort, connectedness, energy, self-esteem and wisdom; there is little or no evidence to indicate that the practice of family member presence is detrimental to the patient, the family or the health care team. Indeed family member presence during invasive procedures or resuscitation should be offered as an option to appropriate family members.

[Read more…]

Filed Under: Participatory Medicine Leave a Comment

October 22, 2014 By e-Patient Dave 17 Comments

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

Boy, is this a thrill: the Chief Residents at the Mayo Clinic have invited me to be their Visiting Professor in Internal Medicine next March.

A patient. As Visiting Professor.  Is that a sign of the changing times?? The announcement is being made today, during the patient panel at Mayo’s sixth annual social media summit. Here’s their post, including a four minute video interview.

Here’s their press release – their words – then I’ll discuss below.



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

[Read more…]

Filed Under: Leadership, Participatory Medicine 17 Comments

September 28, 2014 By e-Patient Dave 11 Comments

How early should patient voices be heard in the research process?

Timeline graphic - when to involve patients?
Click to enlarge. Graphic by Bettina Ryll, MD/PhD, Melanoma Patient Network Europe (MPNE) in EORTC patient course 2014

I’m in Madrid at the ESMO Congress, “the European ASCO.” (ESMO is the European Society for Medical Oncology; ASCO is the American Society of Clinical Oncology, and its annual conference is huge, as is ESMO’s – over 18,000 attendees.)

Yesterday I led a session titled Meaningful patient involvement in clinical trial endpoints, and a couple of slides stopped me in my tracks. (If you don’t know the term “endpoints,” see discussion below. In short, it’s what they decide to measure, to see if a treatment is effective.)

The first slide here (click it to enlarge) points out a disconnect: the yellow triangle shows that today, patients are mostly involved toward the end of the process – after someone has decided what should be studied, and designed a trial to do that. At bottom right, in the blue band, we see that in this model the patient’s role is “doing things right.”

But the creator of this slide is German doctor Bettina Ryll (living in Sweden), whose husband died of malignant melanoma. [Read more…]

Filed Under: decision making, Events, Participatory Medicine, public speaking 11 Comments

September 24, 2014 By e-Patient Dave 1 Comment

Slides and links for today’s presentation to Rotary Club of Seattle

Seattle Rotary web bannerUpdated 9/29 with the promised additions

Seattle has the world’s biggest Rotary Club – a lot of sharp, focused Seattle business people. Very different from my usual talk to a medical conference … I’m talkin’ to these people as patients and family members! So the content is different, and some is new this week.

Here’s the video (32 minutes):

Seattle Rotary #4, September 24, 2014 on Vimeo.

Two notes about the video:

  • The fonts didn’t upload correctly so some of the layouts overflowed. (30 years into desktop publishing and they still can’t make it work reliably!) An accurate PDF of the slides is on Slideshare.
  • Around 31 minutes I say that I’ll post my call to action online: our society needs mid-level managers who know how to create a team and produce a result! They’re on slides 50-56.

As promised, links to material cited in the talk:
[Read more…]

Filed Under: Events, Health data, Participatory Medicine, public speaking 1 Comment

July 23, 2014 By e-Patient Dave 1 Comment

US News: 10 Tips from Empowered Patients. (Mine: the basics of empowerment)

Screen capture of US News web headlineLast week US News & World Report ran a “slide show” (series of short pages) with tips from 10 empowered patients. They’re all good – I recommend you go read them. (Click the graphic, or click here.)

Knowing that other patients would be giving lots of tips, for mine I decided to focus in mine on something that’s been on my mind a lot lately:

We’ve learned that the patient movement shares patterns with other cultural awakenings. Who knew?

I’m 64 years old. In the ’60s I learned that step one of empowerment is to know what you want. Step two is consciousness raising: Realize who’s saying what to whom, and what assumptions that might imply. Perhaps it’s what you’d like; if not, step three is to ask for it. 

Enlightened patients (and clinicians) know that nobody knows everything – neither patient nor clinician – and approach it as a partnership, in what we call ‘participatory medicine.’

It feels a little odd to be teaching empowerment principles (which I learned in college long ago) to a mass market audience, but increasingly I see this is what we need to do.

This is no small issue – it’s not just about patient rights per se. If people haven’t thought about what they want, and haven’t become conscious of what’s happening around them, and haven’t asked for what they want, then when advocates request change, earnest physicians have every right to say, “Look, my patients aren’t asking for this.”

So think about what you want, and see whether things are going the way you want.  That applies both in a hospital and in a doctor’s office – anytime you’re tending to someone’s health, including your own.

Filed Under: Health policy, Leadership, Participatory Medicine, patient engagement 1 Comment

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