PhD student just asked me which journals I read to stay up to date on health + tech. My answer: Twitter.

It was classic RT bait and indeed it was echoed dozens of times by fellow Twitter geeks — more than any other tweet I’ve written.  But I would like to qualify it with a fuller explanation.  I don’t just read Twitter and ignore journals.  Far from it. For me, Twitter is a filter, a suggestion box, an idea machine, and a window.

Here’s the story:

I received a familiar and welcome request via email last Thursday:

I am a graduate student in communication at [a university]. You seem to be one of the people at the forefront of the field regarding Web 2.0 technology and health. I am very new (consider me a blank slate) when it comes to knowing what is going on in this field, but I would like to know more.

I have downloaded a number of your articles from Pew Internet, as well as a couple of data-sets from Pew as well.

I am wondering if you have any advice (names of researchers; websites; reference lists of peer reviewed articles) that you may be able to share with me…

Thank you for your time and help. You should know that with all the articles you’ve already published online, you’ve already helped me significantly. So thank you.

I love getting emails like this and I try to respond as quickly and as helpfully as I can.  I welcome the new ideas and approaches that come from students. I also believe in the principle of “be nice to everyone, they could be on your hiring committee some day.”

Here’s my response:

Thanks very much for your interest in my research.  There is a lot to catch up on, but don’t worry, it also is changing so fast that nobody is fully up to date!

For a historical perspective, I recommend reading the E-Patients White Paper — downloadable from the e-patients.net blog (right sidebar).

You have probably already found the Pew Internet Health page, but in case you haven’t: http://www.pewinternet.org/topics/Health.aspx

You can select from a dropdown menu on that page to read only Reports, which might be a shortcut.

The best paper I’ve read recently, if you want to just fast-forward to today, is a book chapter on online health information: PDF

And if you’re not yet following me on Twitter:  http://twitter.com/SusannahFox

You’ll find a large and welcoming community there.  Pay attention to hashtags like #hcsm and #health2con — follow the ones that interest you. Honestly, Twitter is better than any peer-reviewed journal for staying up to date on tech & health.

But I realized that a newcomer would benefit from a longer explanation of Twitter’s possibilities. So here goes, a very subjective health+tech guide to Twitter:

Twitter as filter: Because I get more value from what my colleagues recommend than any RSS mix I could put together.

@ahier separates the wheat from the chaff, consistently pointing out the best information related to health and technology.

@KentBottles – Just how much do I love Kent’s picks? I get up on Sunday mornings looking forward to seeing what he recommends from the New York Times.

@pfanderson has probably forgotten more than I’ll ever know about information technology and its intricate connection with health care. Plus she makes me feel like a welcome friend whenever I check in on her feed (although we’ve never met).

Twitter as suggestion box:

@gfry and @markhawker are two of the health/tech field’s toughest critics and when they tell me to refocus my lens, I do it.

@kevinclauson brings two valuable perspectives — as an academic and as a pharmacist. I could never hope to find the journal articles he highlights, but what I really appreciate are the collegial DMs he sends when I post something new.

@mindofandre and @digiphile completely get what I do and cc me on tweets highlighting articles they know I need to read.

Twitter as an idea machine (and those ideas often are inspired by people outside my field):

@timoreilly – Sure he’s an internet industry guy who is interested in health care, but it’s not his focus, so I count him as an outside influence. He’s a desert-island follow for me.

@stoweboyd is a futurist who is responsible for at least a half-dozen a-ha moments for me since I started following him.

@zephoria stuns me weekly with her insights. She’s another desert-island follow.

Twitter as a window: Because I can’t be everywhere I’d like to be.

@epatientdave is one of the most passionate, but on point, live-tweeters I know. Because of his enthusiastic review of a talk by @SeattleMamaDoc I knew I had to watch the video as soon as it was posted. It knocked my socks off.

@healthythinker is the person I’ll nominate to cover any event I can’t attend because her observations are so sharp, especially when she has time for a blog post like this one.

This list is by no means comprehensive.

I currently follow 591 Twitter accounts and a few public lists.  I also created private lists to follow scientists, health reporters, and patient bloggers, among others. Twitter curates the full range of health-related reading suggestions, from the New England Journal of Medicine to Mothers with Cancer to The Immortal Life of Henrietta Lacks. It’s library + field work combined.

How do you use Twitter?  Who are your desert-island follows?

Their analysis of data from the Health Information National Trends Survey (HINTS) shows that the vast majority of Americans, “despite a decade’s worth of exposure to health information on the internet,” continue to trust physicians. Don’t you just love the word “exposure,” as if the internet is an infection let loose on the population?

Another favorite passage includes a citation of a 2008 study: Does the Internet displace health professionals? Yes? No? I’ll never know since it’s behind a pay wall, but I suspect it is being cited with the same “silly rabbit” tone I’m seeing associated with that awesome 1995 Clifford Stoll “hype alert” article making the rounds this week. Hesse, Moser, and Rutten seem to be reassuring NEJM readers: Don’t worry, you are still #1 in your patients’ hearts.

But hold the smartphone: Guess which source consistently comes out on top when people are asked where they actually turn first for cancer information? The internet!

The HINTS data dovetails with one of Pew Internet’s consistent findings:

The internet does not replace health professionals.

But the kinds of health information sought and found online are different from what people can glean from most traditional sources.

Six in ten e-patients access peer-generated health information such as blog posts, doctor/hospital ratings, podcasts, or customized health news updates.

The HINTS researchers conclude by connecting their findings on doctor-patient communication to national health IT investment. Sure, that’s a valid finding, but I think they are being too modest. HINTS and Pew Internet data show that the internet offers much more than doctor-patient communication. It is a just-in-time information device that people can tap into wherever they are, whenever they need it, connecting with whatever source they believe will help them at that moment. And that source is not always a doctor.

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.

From Drug Companies & Doctors: A Story of Corruption in The New York Review of Books, around New Year’s.

Dana Blankenhorn of the ZDNet health blog called it “a bombshell.” I couldn’t agree more. And I must say, with all the smart people in this community, why on earth haven’t we heard more about this??

And how on earth are we supposed to be empowered participatory patients if we can’t trust the world’s leading journal?

For one thing, we can have our eyes wide open about the evidence we’re supposed to trust. Get educated. Learn how to read health news reporting – including the journals. Wise up.

Think critically. It’s a fundamental part of being an empowered patient.

_____

Related reading:

No *other* conflict of interest, huh? (11/08)

Negative data on Seroquel suppressed by manufacturer (2/09)

Dr. Reuben deeply regrets that this happened (3/09)