Power to the Patient!
The latest in the occasional series of e‑patient requests, in which someone asks me to post their search for information. No guarantees; sometimes we connect with answers, sometimes not.
I know nothing about the issues – I’m just forwarding the request. Please share on social media and/or forward this to anyone who might have suggestions. On social media, use the hashtag #PedsGI, to tap into that network.
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.
Several of you have commented that I started a series this spring on the evolution of my business and my advocacy over the past eight years, and then it stopped. Well, it hasn’t stopped, but the work itself has collided with the reporting about it.
I have a new essay, just published today, in Patient Experience Journal, which brings together a ton of interwoven issues I’ve been reading and thinking about: The paradigm of patient must evolve: Why a false sense of limited capacity can subvert all attempts at patient involvement. It’s in that journal’s first Special Issue, devoted to patient involvement in producing healthcare.
“Private suites. Caring staff. Room for family.” Woohoo!
On the way home last night I drove past this billboard, turned around, and went back to snap this photo. See, hospitals know that if we have a good maternity experience we’re more likely to come back when sick, so they offer this.
Fine with me, but when we DO come back, shouldn’t we get what they promoted?? Let’s ASK them to provide it, for ALL healthcare! Otherwise it’d be kind of a bait & switch, now wouldn’t it. :)
Empowered patients & families praise ’em when they do well, and when they don’t, we ask for what we need. Do it!
Edit: In a comment below, @MightyCasey points to another factor I should have noticed: while hospital marketing departments are promoting the service provided in their maternity suites, the grim reality remains that the US has the worst maternal mortality rates in the developed world. Here’s the chart from one of the NPR posts Casey links to, which uses data from a big (38 page) article in Lancet last year. Look at US healthcare’s performance in the past generation – this is the number of dead mothers per 100,000 live births; :
In short, while the marketing is ramping up, actual delivery of maternal care is getting much worse, especially compared to what other developed nations are doing.
China, for instance (not shown in this graph) has improved since 2000 from 85.2 maternal deaths to 17.7, while we’ve gone from 17.5 to 26.4. This matches my recent post on the e-patient blog about “amenable mortality,” which is whether a system actually delivers the care that it knows how to do.
Short link to this post: dave.pt/empoweredengaged or bit.ly/empoweredengaged
After talking to people for months about this same important question, I decided to get modern and post it on the internet. :-) 8½ minute video – slides with narration. (Email subscribers, click the headline to come online and watch.)
This isn’t the only place I write – other places include e-patients.net (the blog of the Society for Participatory Medicine), the BMJ blog, and occasionally others. In every case it’s something relevant to my mission, so I’m going to try posting here, occasionally, links to things I’ve written elsewhere. These are from the past two weeks. (Okay, so this time it’s weeks in review…)
June 7, e-patients.net:
For people working to create real change: “The habits of an improver offers a way of viewing the field of improvement from the perspective of the men and women who deliver and co-produce care on the ground …”
