Alumni club dinner: How e-patients can help healthcare achieve its potential

After eight years of speeches at conferences, I’ve observed that while medicine achieves incredible miracles that were impossible a generation ago – like saving my sorry life – it still falls short of potential more often than necessary. Lots of people write big fat books about it, but some problems don’t change, which raises the question: what can we tell consumers of the system, patients, that will help them get the best care when they’re in need?

So that’s a new series of speeches I’ll be doing, not just at big conferences but at local meetings in cities and towns, hospitals and community centers. These talks aren’t designed to change the healthcare system much; to the contrary, they’ll empower ordinary people who use the system to help the system do its best.

The first such meeting was Tuesday night, in Portsmouth NH, at the monthly meeting of my local college alumni club, the MIT Club of New Hampshire. It was only about 40 of us, informally, in a nice Greek restaurant called Cafe Nostimo. I brought my own Brookstone pocket projector, and we had to jimmy together a pile of things for it to sit on, so sometimes the image flew off the screen.

My wife was amazingly kind enough to create a handheld video with her iPhone for an hour. (Yes we know about tripods and phone holders but this wasn’t planned, so I’m just grateful to her!)  Here are the slides and very informal video (don’t complain!), followed by links to various things I mentioned. (Attendees, if you want a link to something else I mentioned, ask in the comments.)

Links:

• Society for Participatory Medicine
• My Twitter and LinkedIn accounts
• My books, most of all Let Patients Help
• My TED Talk
• For Dr. Grossman, our October speaker: Register to be an organ donor. (Remember, he said the new standard is not to worry about medical conditions that used to discourage donation; the new thinking is that by the time you’re a donor, medicine might have advanced enough to solve that problem.)
• The paradox, part 1: healthcare is saving hugely more lives than last century – a ton of us are not dying, thus getting old. Hooray!:
  • The population pyramids: current master version on the Pew Research website, and my blog post about it when I turned 65
  • Surgeon Jon C White’s blog post about >65% of all humans who’ve ever been 65 are alive today.
• The paradox, flipside: in the US especially, it so often falls short of what it knows how to do:
  • “American healthcare: a malignant tumor that can’t stop killing its host” – blog post on Patient Power that includes three graphics I used: the Kaiser Family Foundation’s never-ending cost curve, the “fire truck in a sinkhole” slide on “amenable mortality,” and the life expectancy vs healthcare spending chart (here’s an updated, interactive version)
  • Here’s the Commonwealth Fund press release I showed; you can google to find many more.
• Networks of patient communities:  SmartPatients.com, Inspire.com, and my humble messy patient communities page
• My essays in the BMJ (nee British Medical Journal): How the e-patient community helped save my life and From patient centred to people powered: autonomy on the rise
• Kim Goodsell’s poster (Google her name for more about her)
• “The revolution” – when artists and musicians start to show up –
  • The #pinksocks hashtag on Twitter
  • The Walking Gallery of Healthcare (FB page) started by kidney cancer widow @ReginaHolliday (Forbes: Will Regina Holliday become healthcare’s Rosa Parks?)
  • Gimme My DaM Data (Data About Me) – rock video by Ross Martin MD and his garage band
• The OpenNotes movement. (Note: OpenNotes is a movement, not a product. It’s a feature than can be switched on in most medical record systems; ask your docs & hospitals to activate it!)
  • If you’re not sure how much this matters, see this tweet of the difference with screen captures from my friend and SPM colleague (and fellow OpenNotes advisor) Liz Salmi, a brain tumor patient in Sacramento
• HospitalSafetyGrade by the superb and hardworking Leapfrog Group
• Better Health While Aging podcast, by geriatrician and SPM member Dr. Leslie Kernisan. (Do you know what the Beers list is, and why it’s important? It’s one of the first things I learned there.)
• “Giving patients an active role in their healthcare” – my blog post about the first appearance of participatory thinking in the Harvard Business Review, Nov. 2016

That’s all for now, folks – thanks to the several dozen who joined us.  If you’d like to have a similar talk for your consumer / public audience and you’re within driving distance of Nashua NH, see my contact page and we’ll see what we can do. Can’t afford to fly around doing freebies on my own nickel, but let’s see how many lives we can touch!