e-Patient Dave

Power to the Patient!

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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.

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This.

Graphic Recorder's depiction of Lucien Engelen's keynote at the Joule Innovation Forum

Here it is, all in one picture: the future of healthcare. At least a lot of it.

These are the topics Lucien Engelen has been talking about, the concepts he’s been developing, since arriving at Radboud University Medical Center (RUMC) in Nijmegen, The Netherlands. You MUST pay attention to what he’s thinking about, because it’s coming, and most people don’t know it yet. So study that picture.

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New presentation: “Failure to share data – both ways – makes medicine fall short.”

As healthcare progresses, my business is changing: new speech topics, and more advisory projects. This is a two-part video of a new speech last month, at the New England chapter of HIMSS (the big health IT systems society). Finally clients are agreeing that there’s more to talk about than “Dave’s scary cancer story” – most of this speech is information that didn’t exist when I started giving speeches. Predictions are coming true, so new imperatives emerge.

The videos: (Email subscribers, if you can’t see the videos, click the headline to come online.)

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Reusable building blocks: a speech (to the Philippines!) by video Q&A

Click to watch the video series in “couch mode” (autoplay) on Vimeo

One of the major enablers of the e-patient movement is the internet. In addition to serving as a vast widely-accessible library, it provides “information capillaries” that make it possible for vital information to flow to the point of need – without centralized control. My life is just one of many that’s been saved by this radical change in what’s possible.

Another mechanism is that the Web has made possible a truly incredible collection of tools by which we can assemble combinations of things that we find useful – again, without any centralized control. One example of this is MOOCs (Massive Online Open Courses), which I’ll be writing about more soon: the content for a course is made available to anyone who has internet access, which is enormously different from requiring that someone travel to the school.

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