Sachin Jain and John Rother’s JAMA commentary, “Are Patients Knights, Knaves, or Pawns?” is an article that begs to be shared.  The first time I read it I had to stand up, I was so excited — how can I design a survey to capture these questions?! was my first thought. My second thought was how soon can I post this online and get the debate rolling?

Over at the e-patients.net blog, Susannah Fox asks: If 16% of internet users say they have looked for information about immunizations or vaccinations online, what are they finding in those searches? How do they judge the quality of information they find? More broadly, does the benefit of greater access to information outweigh the costs?

"I feel a strong sense of responsibility to all of our respondents. They are all busy, doing a million things in their lives, and yet they take the time to answer our questions. Every time I sit down to write, I think about them in aggregate and individually. The people who make a way out of no way, like the woman who found an air pump for her husband’s therapeutic mattress on eBay when the manufacturer told her it had been discontinued. The man who, pre-internet, spent hours at the library researching his daughter’s rare disease and now marvels at what he can learn and share online. The family who has been passing down knowledge of their hereditary condition for over 100 years and now is able to share their wisdom online."

— Susannah Fox, in reply to this heartwarming post from Regina Holiday, on the people behind our data.

(Source: e-patients.net)

"The vast majority of American adults who go online for health information are probably not hypochondriacs, nor are they “cyberchondriacs.”"

— Associate Director Susannah Fox weighs in on the topic of “cyberchondriacs.” (Read the original post and her comment for more details.)

"People often go online first to prepare for doctor appointments, and then go online after to recover from a doctors appointment."

— Associate Director Susannah Fox on ABC News Radio, discussing her new report, “The Social Life of Health Information, 2011.”

(Source: abcnewsradioonline.com)

Associate director Susannah Fox wonders: Is “peer-to-peer healthcare" an idea whose time has come? In this new commentary, Susannah examines evidence and recent examples. Join the discussion at e-patients.net.

Peer-to-peer health care

Associate Director Susannah Fox (@SusannahFox) discusses peer-to-peer health care and the “frontier spirit” of California in this new video from the Stanford School of Medicine. Susannah will be delivering the closing keynote at the Medicine 2.0 conference on Sept. 18.

Further Reading:

(Source: scopeblog.stanford.edu)

"It worries me that people are so eager to promote a sensational headline. The goal of research should be to help people make good decisions based on sound data. Facebook is not a dominant source for health information. Not even close."

— Associate Director Susannah Fox, quoted in a recent piece on questionable social media statistics.

Survey resource: Health Survey Questionnaires, 2000-10

by Susannah Fox

For many years I have kept a personal archive of every health-related survey question the Pew Internet Project has fielded, dating back to our first health survey in 2000. I have shared it with colleagues and fellow researchers, but realized today that of course I should just post it online.

Download the PDF: Pew Internet health surveys 2000-10

If you would like a Word version, I am happy to send it to you via email (sfox [at] pewinternet.org).

Please note: this document contains only the questions, in the order and form they were asked in our phone surveys, not the results or the insights we gleaned. For survey data (the actual results) please visit the Data Tools section of our site, particularly to explore survey questions or to download data. Or read any of the 24 reports we have published on the internet’s impact on health and health care.

As always, I am interested to hear from you. Please send questions, comments, or suggestions via email or Twitter.

Commentary: Peer-to-peer healthcare on NPR

by Susannah Fox

To me, there are two types of breaking news in health care: the macro and the micro.

Macro health news breaks when there is a natural disaster, a scientific breakthrough, or a new twist in a policy debate (see: “ACOs”). I read up on the facts and try to make sense of the latest turn of events, but usually from a comfortable distance.

Micro health news breaks when a loved one gets a serious diagnosis. Then I follow the unfolding health care story with intensity and I care more about the outcome.

Nancy Shute of NPR pulled off a nice trick when she reported on how one online community swarmed to the rescue of a woman who was recently diagnosed with a rare condition. The story grabbed my attention with micro intensity but was able to make a macro point: “Web Communities Help Patients With Rare Diseases.” By the end of it, it mattered to me that one woman’s kidney was saved thanks to a Facebook group. I bet it mattered to a lot of listeners, not just because it was a good story, but because it resonates with their own experiences. Pew Internet’s research shows that 1 in 4 internet users living with chronic disease go online to find other people with similar health concerns. The report Peer-to-peer Healthcare also chronicled how those connections can make all the difference in the world, especially among people living with rare disease.

The Power of Mobile

Associate Director Susannah Fox talks about the power of mobile connectivity at Mayo Transform 2010: Thinking Differently About Health Care.

The access revolution is over. Mobile is changing us, changing our frame of reference so that we see information as portable, personalized, and participatory.

The full text of Susannah’s remarks are available on our website.

AIDS.gov’s Interview with Pew’s Susannah Fox on “Latinos Online”

AIDS.gov interviews Susannah Fox about findings from a new report “Latinos Online, 2006-2008.”

Further Reading