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Participatory Democracy, Participatory Medicine

Susannah Fox

More than half of the entire adult population in the U.S. used the internet to get involved in the 2008 political process. Blogs, social networking sites, video clips, and plain old email were all used to gather and share political information by what Lee Rainie has dubbed a new “participatory class”:

  • 18% of internet users posted comments about the campaign on a blog or social networking site.
  • 45% of internet users went online to watch a video related to the campaign
  • Half of online political news consumers took advantage of the “long tail” of election coverage, visiting five or more types of online news sites.

And guess what? This participatory class of citizen is not ready to go back in the box. Many people expect to stay engaged with the Obama administration and you can bet that the rise of mobile applications will accelerate this trend toward engagement for lots of Americans.

My new survey data shows that not only is there a participatory class of citizen, but there is a participatory class of patient.

Most people with a health questions want to consult a health professional – no news there. Second most popular choice: friends and family. Third choice: the internet and books (yes, books are still popular, even among internet users!). But participatory patients (aka, e-patients) are using the internet in new ways. They not only gather information, but seek out expert opinions, such as the “just in time someone like me” who holds the key to their situation.

This participatory class is reading blogs, listening to podcasts, updating their social network profile, watching videos, and posting comments. Technology is not an end, but a means to accelerate the pace of discovery, widen social networks, and sharpen the questions someone might ask when they do get to talk to a health professional.

GenY and GenX internet users are the most likely groups to be turning up the network volume in health care, but I’m betting that no e-patient of any age is going back in the box.

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11 replies »

  1. I do agree with all the ideas you’ve introduced to your post.
    They are very convincing and will certainly work. Still, the posts are very brief for novices.
    May just you please extend them a little from subsequent time?
    Thank you for the post.

  2. I agree with that, most of the people consult first in some medical practitioners when it talks about health. And their second choice must be the internet books, news and other related products. Even me I do the same but I got answer on my health questions in internet. When i research about Fertility kits on the net, I got the answer i am needing to have my medication.
    Visit: http://instatest.com
    But it depends on the person where he/she can get the information to answer his/her queries.

  3. Thanks, Jane!
    I still think about your use of the word “citizen” instead of “patient” or “consumer” – and I also like the reference to the “creative class.” Thanks for the reminder of that!
    In preparation for the conference I’ve been reviewing my three favorite studies from the past year:
    The Deloitte Center for Health Solutions typology which found that 8% of respondents are “Online & Onboard” (maybe matches the Pew Internet typology’s 8% who are Digital Collaborators).
    Edelman’s Health Engagement Barometer and their great “Health Info-entials” and the “New Second Opinion” (it’s the network, not one single source).
    The Center for Studying Health System Change on patient activation — 41% of adults have the knowledge, skills, and confidence to manage their health.
    In all of those studies (and in the upcoming Pew Internet report) we have to remember that while it is fun to showcase the early adopters and the enthusiasts, most Americans are just not that into this stuff. Fully 61% are in the Stationary Media Majority, for example, according to my colleague John Horrigan (see “The Mobile Difference” on pewinternet.org).

  4. Susannah, well-put, as well as Rick’s and Gilles’ comments. I would also point out that there is a rise of a “creative class” of people that Richard Florida wrote about in 2002. This is a larger phenomenon that could include but isn’t limited to health care. The forces that shape the creative class — the economy, the community, etc. — also shape the environment in which health and health care are delivered and consumed. What’s driven people into the creative class has been uncertainty and a feeling of a lack of control in their jobs, their communities. The analog in health care is clear: a growing community of people are looking to co-create their health. I agree with Dr. Lippin on the class issue. But I hear about projects in the works to address this across the U.S., so I remain hopeful that the gap in participatory medicine can and will be closed over time…sad to say the larger issue of health disparities persists.

  5. It is clear that Susannah is talking about a segment of the US population and that many have been left out so far. Susannah has been involved in the issue of the digital divide for quite a while. It has been a while since we’ve known this is cutting-edge stuff. See http://www.jmir.org/2005/3/e32/
    But when the new generation of medical students will become doctors, none of this will be considered “cutting-edge”. It will be boring and very useful.

  6. Rick, Anon,
    You are right: until everyone not only has access (to technology, to information, to health care), but knows how to use it, we are playing at the margins.
    But I’ll quote once again from my favorite remarks by Dr. Mark Smith, president and chief executive officer of the California HealthCare Foundation: “transform care within the box, within the confines of where we are and where people living with chronic conditions are” and worry about full participation later.
    Recent immigrants, people with less education, and our “oldest old” are certainly at risk of being left out of the Health 2.0 revolution, but I’ve also seen examples of great work being done to serve safety net populations especially if they have “second-degree” internet access through a relative or a friend.
    Yes, let’s acknowledge that this is cutting-edge stuff (and my survey data will confirm that in spades) but so was the Web nearly 10 years ago when 46% of U.S. adults had access and only 5% had broadband at home.

  7. Great. Half the electorate went online during the campaign to become misinformed, hear what they wanted to hear, and feel good about propaganda. That should make them easy pickings for all the vendors on this site.

  8. Agreed.
    Participatory class = ? 10% use of health resources
    Non-participatory class = Everything else
    Good for vendors, advertisers, erectile enhancers, hair growth, Botox injectors
    Bad for bending cost curve, at least until twitter-ites start growing bigger prostates. 2050 maybe.

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