I always suspect that audience members have as much to share as I have to say. So when Mary Madden and I received an invitation to speak at the National Institutes of Health we created a participatory talk about participatory medicine: 35 minutes of our findings; 45 minutes of discussion.

It was a blisteringly hot day, so we ended up having 50 people in the room and about 50 more watching the videocast from the cool of their offices on the NIH campus. The video is a little blurry, so I recommend treating it like a podcast and downloading the slides separately, but you might enjoy hearing how we wove together our research on digital footprints, Web 2.0, and health.

Here is a sample of the excellent questions we were asked (and our attempts to answer them):

Is “do-it-yourself” medicine happening online as more people use the internet to get health information?
We have asked respondents about health insurance status over the years to see if people are self-diagnosing instead of going to a doctor. We have not seen evidence for that. We see people using the internet as a supplement, not a substitute.


What about people who are offline? Are they accessing any information online?
The Pew Hispanic Center is about to come out with a study showing that most Latinos get health information from broadcast media – TV and radio. We also see “second degree” internet access – someone in the household may have access and perform the information searches on behalf of a family member who is offline.

What about Baby Boomers? What do you see in the future for health and medicine as the population ages?
First, be careful when you hear people talking about how seniors are the “fastest growing group online” since most of the growth comes from boomers aging in to the 65+ demographic, not people in their 80s and 90s suddenly going online.

Boomers are likely to hang on to their internet connections as they get older and are participating in a wide range of online activities – including social networking sites, much to the chagrin of their kids. (See: “Generations Online” report.)

Boomers could be a big driver behind participatory medicine as they age, as they begin to deal with more chronic conditions, and as we start to face a capacity challenge in medicine. Participatory medicine could help fill in the gaps.

What about information reliability?
In 2002, we worked with the Medical Library Association on questions about information quality and we returned to that topic in our 2006 study, making some headlines about how most internet users do not check the source and date of health information online.

However, I’m going to start to recant my previous testimony because there was a study done in 2006 by HHS showing that only 2-3% of health sites display these two quality indicators. I’ve been documenting the “failure” of internet users, but it makes sense that they have stopped looking for a needle in a haystack.

Plus, e-patients tell us that patient communities are able to vet and distribute the best information. You can use those e-patients as your agents – to redistribute your information.

What is the basis for suggesting we publish in HTML over PDFs?
PDFs lock up the information in one pretty document, in one format. HTML can free it.

The first part of any outreach campaign is to make the information accessible, whether it is on a small-screen mobile device or to people who want to grab content and paste it into an email. If you want to recruit young Latino and African American men for a clinical trial, for example, make sure your information is mobile-phone accessible. (See: “Mobile Access to Data and Information” report)

What are the racial/ethnic differences in internet usage and in “e-patient” activities?
The Pew Internet Project’s sample sizes for health surveys have been too small to do in-depth analysis on race/ethnicity and economic status. In addition, all of our health surveys have been conducted only in English. As we know, the profile of the English-speaking Hispanic population is very different from Spanish-dominant Hispanics. (See also: “Data and Insights on Minority Populations.”)

What are your thoughts on the potential for mobile smart phones (a la iPhone) to drive consumer health-related applications in health promotion, preventive medicine, and clinical medicine in the ‘near’ future for the masses (including the at-risk, isolated groups mentioned in your talk)?
I’m just pointing in a direction, to show that 50% of seniors have a cell phone, while only a third have internet access and young Latino men are “mobile centric.” Make sure that what you’re doing is easy to email, easy to text, easy to read on a mobile phone.

The list of topics we touched on goes on: the AHRQ innovations site; Bo Xie’s work with seniors at the University of Maryland; the HINTS survey; online banking trends as a tip for the health insurance industry; the persistence of bad or wrong information online; the challenges of participating in Wikipedia; surveys of doctors by Manhattan Research.

If you have questions or reactions to the any of the above, please post them in the comments!

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