How do you know when an idea is taking root? It’s a question I constantly ask, in both my inside and outside voices, as I travel around banging the drum for listening to patients as a worthy voice in healthcare. Well, this month I got a piece of news that blew my mind so much that it’s taken me two weeks to decide what to say:
This blog is now being archived by the National Library of Medicine. In their History of Medicine Division.
Their post about it is here. Quote:
The National Library of Medicine has a mandate to collect, preserve and make accessible the scholarly biomedical literature as well as resources that illustrate a diversity of philosophical and cultural perspectives not found in the technical literature. New forms of publication on the web, such as blogs authored by doctors and patients, illuminate health care thought and practice in the 21st century. (Emphasis added.)
… NLM has collected the following examples:
And guess who’s listed first:
…a cancer patient and blogger who has become a noted activist for healthcare transformation through participatory medicine and personal health data rights. Mr. deBronkart writes in this post as a newly diagnosed skin cancer patient who is taking action to make his treatment most cost-effective. …
Wow. I mean, I spoke at the “The Library” (as they call it) in April 2010, at their e‑Patient Day (right), and that felt like the movement was being legitimized – but it’s one thing to have a conference, and another entirely to say “Okay, we’re recording this.”
Did you know the National Library of Medicine is the world’s largest medical library? Did you know they capture all the medical journals there, paper and online? (It’s a BIG place.) Did you know they have an extraordinary “Turning the Pages Online” project (left), to let you and me and your kids and everyone view rare medical manuscripts online – including an iPad app?
So – imagine two weeks ago, before I spoke at the Midwest Chapter of the Medical Library Association, when another speaker approached me and introduced himself as Dr. Jeffrey Reznick, the chief of the Division of History of Medicine at the National Library of Medicine. Then he said, “It’s such an honor to meet you,” he said. “Did you know we’ve begun capturing your blog into the Library?”
Thud. No, I did not know that. Thank you, sir.
The impact of this:
Culture change is hard, especially in a rigorous academic field like medicine. Time after time clinicians have told me how they’re trained, even disciplined, to stick to what’s approved by the establishment. This has been one of the challenges of the “let patients help” movement – the message has to be crafted in a way that shines a light on what’s newly possible, without being inappropriately anti-establishment.
For that reason, virtually every one of my talks quotes Dr. Donald Lindberg, Director of the Library, saying that if he read two journal articles every night, at the end of a year he’d be 400 years behind: nobody can keep up. The implication is, “Hey, look – the top guy says it’s no failure if a less trained person has seen something you haven’t.”
Whoever at The Library decided to track blogs, and whoever decided to include patients, thank you – I guess this means that “patients as a worthy voice” is no longer out of the question. You get it – you get what’s happening as medical knowledge diffuses through the internet.
p.s. Why Medlibs rock:
The audience, that day in Rochester MN, was “medlibs” – medical librarians. I’ve long said that medlibs rock: when Google fails you, turn to a medlib and ask for help. They’re not just better “googlers” – they understand deep ways that knowledge is stored in medical libraries, and can find things that help doctors as well as patients.
And at that event, one thing we realized is that some people don’t want to “bother” a medlib, thinking they must be busy. Well, guess what – some WANT to be bothered. So we started list of volunteers, titled Bother a Medlib Today! How great is that? Here they are – go for it.