e-Patient Dave

Power to the Patient!

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A mistake, and an apology to Medicine X

Medicine X 2016 promo graphic

In life, in relationships, and in social movements, sometimes things get messy. Despite all the things I’m committed to, I made a mistake last fall while extremely over-tired, and behaved offensively to someone I didn’t even know, a volunteer at the wonderful Stanford Medicine X conference (MedX), about which I’ve written so favorably here and on e-patients.net and even in the BMJ. They’ve decided to ask me to sit it out for a year (i.e. not attend), and I accept it – it’s reasonable. I apologize to MedX and I apologize to the volunteer.

I believe in introspection – “the examined life,” as they say – and continuous self-improvement. So later I’ll say a bit more about what I’ve learned while thinking about this. (Update: that post is here.)

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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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“Let patients help reinvent radiology” (my first Periscoped speech)

Tuesday night in Chicago I gave a 28 minute talk for Philips customers at the huge (56,000 people) radiology conference, RSNA. The leading-edge social media guy at Philips, Noah Harpster (@PhilipsLiveFrom), broadcast it live using the free Periscope live-streaming app (owned by Twitter), and boom, here’s the archive. Unpolished, raw, live. Free.  (Email subscribers, if you can’t see the videos below, click here to view the post online.)

This is the first time I’ve spoken to radiologists. This talk has very little about my cancer story, and a lot about the impact on professionals of two things:

  • When assets digitize, things change fast
  • Information makes new things possible

I also pulled out some props – including a 3D printout I had done locally of my lungs (my bronchi and metastases). I told you that when things digitize, new stuff becomes possible.

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A patient to be inducted into the Healthcare Internet Hall of Fame

HIHOF website badge
Click to visit this year’s inductee page

As an activist for the patient movement – a social change movement – I look for and often cite signs of real change in the establishment, documenting that it’s increasingly accepting patient voices as a real part of the future of medicine. Examples:

  • 2011: TEDx Maastricht was the first TED conference to prominently feature patients as its speakers, produced by Radboud University Medical Center (UMC) in the Netherlands

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Writings and upcoming events – September

Open a medical record spigot imageContinuing this monthly series: here’s this month’s update on travels, new bookings, and writings.

Access to our families’ health records:
The time for action is coming 

The best in healthcare of course depends on access to all useful information, but HHS has reported to Congress that certain parties are “knowingly interfering” with the flow of families’ health records. Two posts:

  • Over on Medium, I commented on a post by entrepreneur Steve Kiernan about this issue, saying:
    “Who out there wants to present an argument why families should be kept apart from their people’s health data? … Is there any ethical or moral argument for no spigots?”

New bookings:

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