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.
I got my first tiny taste of something MOOC-like in 2014. Here’s the story and the result, which anyone could re-use in a MOOC.
In October 2014 I gave a “lecture” in the Philippines, to PSMO, the Philippine Society of Medical Oncology. It was organized by two members of the Society for Participatory Medicine – board member-at-large Ileana Balcu, and oncologist Trixie Tiangco MD, former president of PSMO. Trixie is very committed to patient empowerment, and wanted the e-patient message to get to the PSMO audience as their annual Bernardino Agustin Lecture. There was no budget for plane tickets so we invoked the “pay me with action” clause of my price policy and did some homemade magic. It worked!
They did half the work: they worked out a list of questions that would be relevant for their audience and sent them to me; I assembled some of my existing slides, and using my webcam with software called ScreenFlow, I recorded an answer to each. Here are their questions and links to the answer videos:
- What does it mean to be an e-patient?
- What is participatory medicine?
- What is the relationship between e-patients and the practice of Participatory Medicine?
- Are there e-doctors and e-oncologists?
- Are there criteria, information tools and technologies that must be met in order to maximize peoples’ participation in their care?
- If the choice of doctor is limited by an HMO roster, what can an e-Patient do to still benefit from Participatory Medicine?
- What if the doctor resists participation?
- When is participatory medicine inappropriate? Who decides?
- Do cancer e-patients have better outcomes? (It’s labeled #10 because #9 was merged into others)
You can also sit back and watch the whole set in “couch mode.”
They’re posted publicly with no password – you’re welcome to take them and do anything you want with them.
And that opens interesting possibilities for our movement. To be continued.
[…] participation and open access via the web.” I first wrote about the idea three weeks ago, in Reusable building blocks: a speech by video Q&A, but I’d never touched a MOOC, until recent months when I got involved with […]