In our previous episode I mentioned that “ornery” is a form of the word “ordinary,” and said “It’s the ‘ornery’ people who suffer when the system doesn’t achieve its potential. I stand with them.”
One of my volunteer advocacy roles is to serve on The BMJ’s Patient Advisory Panel. Started in 2014, it’s a truly out-of-the-or’nery project: it’s one of the top medical journals in the world, yet its editors saw that improving care requires PPI – patient & public involvement. And yes, the editors of this journal really do interact with us as the situation requires.
Recently editor Richard Hurley reached out and asked me to weigh in on an issue called “open access” to articles in journals. Open Access articles are free for anyone to view; most articles in journals are behind a “paywall,” i.e. only available to subscribers. It’s a big, hairy, controversial subject – I won’t take time to go into it, but it has a lot to do with how (and how well) new scientific findings reach other scientists.
AND, of course, it has a huge effect on how well new findings become visible to e-patients. “Paywalled” articles are usually not visible to the public, which means they’re hard to find when you’re (we’re) in trouble.
“But somebody has to pay for the publication costs,” say the publishers. And indeed, editors cost money (especially really good ones), formatting the documents costs money, running websites costs money. So if the author of an article wants it to be widely read, they have the option of paying the publisher thousands of dollars (typically) to make the article they wrote visible to anyone (aka “open access.”) Or, some journals (and websites) are completely open access, which means either the work is all volunteer or the money comes from somewhere else. Messy!
So the Open Access movement has pro’s and con’s. But it’s a big deal to e-patients, who generally can’t pay. And as the biology site BiteSizeBio says,
Your scientific research results will only change the world if they are effectively shared with the rest of the scientific community and with the world.
(You might think, “Well, my doctors should subscribe to all the journals!” Two big problems: it’s really costly, and besides, more than 2,000 new articles are published every day.)
So, the BMJ recently decided to run one of its occasional “head to head” debate features – a pair of short essays for and against, by two journal authors who face these decisions in their work. But before publishing, it occurred to Richard to ask, “I wonder what patients think about this.” (Doesn’t that make you happy to hear that??) And he asked me to contribute.
“Remember the patients”
As you’ll see if you open it, I chose not to chime in on the two authors’ perspectives — “I don’t have a dog in that fight,” as the saying goes. Instead I riffed on the famous Abigail Adams quote “Remember the ladies,” sent to her husband John in 1776. “A growing number of us patients are experiencing a comparable frustration at having newly minted knowledge kept from us—for financial reasons,” I wrote, and reminding them that the entire medical system exists for the benefit of patients, so (in my view) anything that impedes patient benefit should be viewed as a flaw.
But publishing does cost money. What to do?
Well, y’know, these scientists don’t do this work free either; they get funds from grants and elsewhere. And I pointed out that the flaw is really in thinking that when the research is finished, our work is done. Wrong: as BitSizeBio said, if it never gets published it will have no impact. So I proposed that we / they widen their lens: grant funding should include money for publication. Because until then, patient benefit will be held back from what it could be.
I hope we can look at lots more issues through the view of the “or’nery people” for whom the system exists.
One more thing…
I was happily astounded to learn that this humble essay has gotten huge attention on social media. Many journals track social media attention using a system called Altmetric, and here’s what it showed the other day for this essay: >90%ile on every metric, and 98%ile+ on some. Dude.
Seriously, deep deep thanks to The BMJ and editor Richard Hurley for once again “remembering the patients.” We are all lucky to have them, and I encourage other journals to get on board. All us or’nery people are depending on you!