e-Patient Dave

Toward a New Science of Patient Engagement

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Speaker Academy #28: “It’s my job to be more interesting than your email” (@TedEytan)

Phreesia webinar screen capture
Click to watch replay on Vimeo

This post is part brag, part teach, part challenge.

Last summer I did a webinar about patient engagement (here’s the replay) for Phreesia, a company that makes an iPad-like tablet that integrates a lot of steps to get you (the patient) into the provider’s computer system. Afterward, they said they “monitor the attention level of the attendees (it’s a GoToWebinar feature) … and it was the highest I’ve ever seen it.”

Really? GoToWebinar feature?  Yep, the system keeps track of how long attendees stay, whether they ask questions, and even whether they listen but stop watching by switching to another window while listening to the audio.

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Geneva, Monday June 27: evening keynote open to the public!

Click to visit press release page
Click to visit press release page

Next Monday, June 27, I’ll be doing something really fun: an evening keynote at a medical conference in Geneva, Switzerland, open to the public. If you know anyone who can get there, please invite them! It’s just 20 Swiss francs (about US$21), and simultaneous translation will be offered.

The conference is NI2016 (Nursing Informatics 2016), whose theme this year is “eHealth For All.” My talk is from 6:20 to 7:20 pm, followed at 8 by a fashion show featuring wearable technology.

The conference will provide simultaneous translation into German and French, and a delegation from China will have its own simultaneous translator.

I’ll take a moment here to mention four international editions of my signature book Let Patients Help, because of the international nature of this event – and because three translators will be present:

French, German and Chinese editions
(and Spanish)

Let Patients Help is available in eight languages, a real sign that participatory medicine is not just an American thing – it’s becoming a global movement. In addition to English, four languages are relevant to this event:

  • Christine Bienvenu
    Christine Bienvenu

    French: Impliquons les Patients!
    Christine Bienvenu (right), translator of the French Kindle edition, would love to find a publisher or sponsor for a print edition. Come meet her!

  • German: Lasst Patienten mithelfen! is Part 1 of the German e-patient textbook Gesundheit 2.0.
  • Chinese: 请患者参与 (available only in China … this may be of interest to the Chinese delegation)
  • Spanish: ¡Dejad que los pacientes ayuden! I mention this because its translators, Elia Gabarron and Luis Fernandez Luque, will also be present.

Again, if you know anyone in the area, please do invite them. Thanks!

 

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Perceptive new work on diabetes stigma. Well done!

Diabetes misconception slideI haven’t had occasion to talk much about it yet, but in November 2014 Dr. Danny Sands said routine blood work showed my hemoglobin A1C was slightly elevated. That’s what they call “pre-diabetic,” so woohoo, I get the privilege(?!) of pivoting from the cancer world to learn about diabetes in its many forms.

Man, it’s complicated – I did everything right, lost 40 pounds, became a runner, and my A1C went up! That’s how it goes sometimes, according to my friends in “the DOC” – the “diabetes online community.” Managing diabetes is complex – lots of work to do every single day. That’s one reason I’ve always said a healthy PWD (person with diabetes) is the archetypical e-patient (engaged patient).

I’m at a diabetes conference (more on that below), and last night I saw what may be the most perceptive, smart, patient-centered presentation I’ve ever seen. Ever seen. Anywhere.

I’m new to this field, so maybe this kind of thinking is commonplace here, but not from what I’ve seen. Lots to say about it, but for today here’s a starter post.

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“Think, think, think”: message to European Cancer Patients Coalition AGM

View mHealth presentation to ECPC Annual General Meeting on Vimeo.

ecpc logoThis is a quick first post to get this online before the meeting finishes. I hope to add more notes below.

I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.

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“When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas

Dana Lewis on stage at O'Reilly
Click image to watch video on the O’Reilly site

For some reason I’ve spoken about this a lot in speeches for more than a year but I haven’t blogged about it. The time has come.

One of my sayings in Let Patients Help is a lesson we learned in graphic arts, and the music industry learned too: “When assets digitize, things change fast.” This is, truly, an extraordinary example.

Some people with diabetes pretty much do as their doctors tell them and the industry tells them – they wait and hope that things will get better. That’s fine with me – I never say that people should be more like me. But when someone wants to take a more active role, I believe society (including medicine) should not stand in the way: let patients help improve healthcare.

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“I’m gonna live live live until I die”: new speech about palliative care at #cccc16

e-Patient Dave CCCC title slideI spoke Thursday to a completely new kind of audience: the Coalition for Compassionate Care of California, which is involved in palliative care.

Palliative care is not a synonym for hospice or end of life. It’s about making life with a disease more comfortable, which can be combined with curative care – it does not mean you’ve abandoned hope of a cure. But many doctors, nurses and insurance companies don’t know this yet. Be informed, and speak up! 

Although it was a new topic, the talk was a tremendous success. Here’s the video, which was captured (at no cost!) by @KSAust (Kris Austin) on Twitter using Periscope. (Email subscribers, if you can’t see the video, click the headline to come online.)

It’s about changing our cultural conversation

I compose every talk for the individual audience. There’s often a lot of overlap with previous talks, but this one was very different: I’ve never talked about this subject. It ended with an enthusiastic standing ovation, which always means the message got through.

Thanks to my barbershop singing hobby, especially my chorus, the Nashua Granite Statesmen, from whom I first heard this arrangement of the song that was the title of this talk: “I’m gonna live until I die.” At the start I pointed out that Frank Sinatra introduced this song the year I was born (1950), and at the end I said that we pass our culture down to the next generation: the talk ended with a performance of the song by one of the Harmony Explosion summer choruses, where we barbershoppers pass the tradition along to the next generation.

Seriously, spread the word, because hardly anyone knows: Palliative treatment can be combined with curative ones. It’s not a synonym for hospice, and does not mean giving up hope – it means making it easier to cope with the effects of a disease or its treatment.