I just ran across this classic video from WAY back – 2010, when the “e-Patient Connections” conference was the best thing on the circuit for our kind of thinking. Pharma marketing wizard Kevin Kruse created the script, and my chorus buddy Fred “Houston” Gallagher helped me record my part in his basement studio.
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.
We must democratize healthcare.
To achieve its potential, healthcare must be democratized.
I’ve reached this conclusion after hundreds of speaking events in eighteen countries over nine years. For me “speaking” has always involved a lot of listening and learning, and the more I’ve learned, the more I’ve puzzled over this paradox:
- Medicine can save incredibly more lives today than ever (evidenced by the extraordinary growth in elder population in my birthday post “65!”)
- Yet we still have terrible shortfalls: we have sewage leaks in operating rooms; we have medical errors causing hundreds of thousands of deaths in the US every year; and much more.
Larry Weed, 1975: “The patient must have a copy of his own record”
This week I’ve had two new blog posts published on other blogs. This one’s close to my heart.
Dr. Larry Weed, who died in June, was a legendary physician, way way WAY ahead of his time in his vision for computers in healthcare, but also for his clear vision that if it’s your health, you need to be actively involved in managing it. AthenaHealth, a medical records system vendor, commissioned me to write a post about him, and it went live yesterday.
I had found a copy of his amazing 1975 book Your Health Care and How To Manage It, and found some astounding things in it. Please go read the post and see the quotes.
Bringing method to medical practice
Essential e-patient training: the uncertainty of all information
Below is a long comment I posted Wednesday on my neighbor @KevinMD’s blog. (Most of his widely read blog is articles he’s found elsewhere; he’s cross-posted some of mine.)
The post I replied to is a thoughtful submission by two grad students (one business school, one med school). Their thoughts are valid but as you’ll see, the issue isn’t apps – this is part of a broader issue that every engaged patient (you!) should understand. Here’s my reply.
WikiProject Medicine: med students join in producing high quality Wikipedia articles.
I’m taking the extraordinary step of rerunning, verbatim, an entire post from the e-patient blog in 2014 about this important development. Why? Because tomorrow an update is coming, and to fully appreciate the news, you need the background.
Looking back on this, I see it sums up tons of different issues that have turned out to be important to a key question about how best to do healthcare: how do we know which information is reliable, and how can we improve how we get there? The answer is clearly not to only listen to the medical literature, which, it turns out, has important delays and quality problems. To understand that radical statement, read the links in this long post.
Peter Frishauf, member of the editorial board of our journal, has brought what is to me the most exciting news for participatory medicine since the OpenNotes project. Importantly, this news may have broader implications – because it addresses one of the core challenges of patient engagement: the quality and freshness of medical articles.
Last fall [2013], UCSF School of Medicine professor Amin Azzam started a course for fourth year medical students to become Wikipedia editors and apply their skills to Wikipedia articles that were important to them and were poor quality. It got big-name media attention (NY Times, The Atlantic), and it should – because as we’ve often written, one of the core challenges e-patients face (and doctors face!) is finding up to date, reliable information.
This is not a trivial question – you can’t just rely on the peer review process, because it too has flaws, and good luck ever getting mistakes fixed. The biggest example is the ongoing vaccine controversy caused by a massive failure of peer review in the top-tier journal Lancet, but there are many others. Another shortfall is what our movement’s founder “Doc Tom” Ferguson called “the lethal lag time” – the years of delay between a result being discovered and the time it reaches doctors.