Participatory Democracy, Participatory Medicine
By Josh Seidman | Popularity: 9%The following is a guest post from Susannah Fox, Associate Director, Digital Strategy, at the Pew Internet & American Life Project. Susannah will be presenting and debating on the issue “Navigating the Health Care Delivery System (and Health Information)” at the first-ever “Health 2.0 Meets Information Therapy” Conference in Boston on April 22-23. This is part of a continuing series of blog entries cross-posted here, on The Health Care Blog, and the Health Affairs Blog, the conference’s Media Partner.
Participatory Democracy, Participatory Medicine
By 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 question 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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April 16th, 2009 at 9:05 am
Susannah,
Once again, Pew comes through with more fascinating data for all of us to chew on!
One of the great questions for all of us trying to help consumers find their way in the increasingly complex health care delivery system is how to integrate these different sources of information. If consumers want (first) to talk to their clinicians and (then) their family & friends but are still going to other sources (probably because their thirst for information is unsatisfied by the first two), that’s fine, as long as we can figure out ways to bring all of that together.
To me, that’s the challenge for figuring out how to make “participatory medicine” work effectively. And we must figure that out if we want a better health care delivery system.
I can’t wait to see the rest of your new data presented (for the first time!) at the “Health 2.0 Meets Ix” conference next week.
Josh
April 16th, 2009 at 11:08 am
Thanks, Josh! I am excited to be presenting a sneak preview of the Pew Internet Project’s upcoming report on the internet (and especially social media) and health care. There’s a network effect at work in people’s lives and we are starting to map it in terms of politics, entertainment, family life, education… and now health.
April 16th, 2009 at 1:20 pm
Josh,
you write “consumers… are still going to other (sourcesprobably because their thirst for information is unsatisfied by the first two)”.
What if they go to other sources for reasons that are unrelated to the satisfaction/disatisfaction? What if the main reason for people embracing the internet as a source of medical information/communication has to do with autonomy? That is where our models really diverge. I think, from my experience with ACOR that patients gaining autonomy may well be the most important aspect of Participatory Medicine. So far we have called them activated, engaged and/or empowered. Out all of these together and you have the making of the autonomous patient (not exactly ala Angela Coulter, but pretty close).
I would be interested to see how Ix therapy works differently for autonomous patients vs patients who expect to be treated with the paternalistic model.
April 16th, 2009 at 9:48 pm
Gilles,
I’m sure you’re right that people go to the Internet (or books, which apparently is on par w/ the Web in popularity) for different reasons. Some people definitely are “autonomous.”
What I think is interesting from past Pew research (Susannah, correct me if I’m wrong here) is that consumers depend on professionals more in health care than for other industries — at least those that Pew studies.
As for how Ix works for different types of patients, since the whole premise of Ix is that the information should be tailored according to individual needs, values & preferences, it should work well for everybody — with one caveat! The “prescribing” partner (whether that be clinician, system or consumer) needs to be able to tailor to that style. The trick, of course, is that’s a lot easier than it sounds.
That said, I’ve seen Ix work really well for all kinds of consumers…but we still have a long way to go.
Josh
April 16th, 2009 at 11:28 pm
Josh,
that is exactly because the professional prescribing partners are so notoriously bad at providing the information ( i won’t even go as far as tailoring, something that may take many years, IMO) that many patients have been using services like ACOR. In the process of getting informed by others (often because they could not get the info from their providers) some of them will become autonomous. It is an amazing transformation to witness.
Of course, the characteristics of the ACOR subscribers are different from the average person looking for health info. They rely a lot more on their peers and much less on books and less on doctors, since most doctors don’t know anything about their disease and this lack of knowledge translates easily into a choice of life or death. But I keep in thinking, if that model works so well for people with deadly and unusual conditions why couldn’t it work just as well for the rest of medicine.
April 17th, 2009 at 8:21 am
You’re both right, I think.
Pew Internet surveys show that most people are likely to say that a professional is their top choice for help when they are dealing with a health issue (which is different from the other topics we ask about, see “Information Searches That Solve Problems” http://www.pewinternet.org/Reports/2007/Information-Searches-That-Solve-Problems.aspx).
Yet Gilles points out another issue — people with rare conditions are not “most people.” They are out on the long tail of health information. A professional that can help with “every day” issues like pregnancy, diabetes, or the flu may not be equipped to help them connect to the very latest research on their particular disease.
April 17th, 2009 at 8:39 am
Susannah, I completely agree.
Over the last decade, I have conducted both structured interviews with patients/caregivers and observed them in clinical and home settings. What those experiences have taught me is that people with serious conditions (and they don’t have to be rare) often want to go deep in the specific health information that they need to help them deal with those conditions.
Part of the question is: How do they get there? Trust is a huge issue. For some, as Gilles points out, they have lost faith in their clinicians (or never had enough of a relationship to deal with) and they become autonomous. But for other patients, they want significant guidance from their clinicians. Still, others want it from another trusted source — see Susannah’s past “Dr. Mom” references.
April 17th, 2009 at 10:58 am
[…] at the “Health 2.0 meets Information Therapy” conference appears on the IxCenterBlog: Participatory Democracy, Participatory Medicine. A good discussion of the issues has already begun — join us! Susannah Fox is an Associate […]
April 17th, 2009 at 11:29 am
Josh,
because the world of patients is made of “some, others and then some” the conversation that took place on e-patients.net missed an important dimension.
You have to put Ix in context, like everything else related to Medicine. There cannot be a single, unified model that will fit every situation, and that is IMHO, something we should all clearly acknowledge.
Just as different patients require doctors to constantly adapt to different models of patient-doctor relationship, so will they require the doctors or information providers to adapt to different models of information provision. Who said this was going to be simple!
April 17th, 2009 at 2:30 pm
Gilles, we may reaching the point of violent agreement.
April 17th, 2009 at 2:34 pm
I also think it’s important to make a distinction between “the average person looking for health info” and people living with chronic conditions — two different sets of H2.0 users, if you will.
See my post on “Patients vs. Healthcare Consumers” at
http://www.diabetesmine.com/2009/02/%E2%80%9Cpatients%E2%80%9D-versus-%E2%80%9Chealth-care-consumers%E2%80%9D-both-if-you-ask-me.html
April 17th, 2009 at 7:54 pm
Well, I don’t know about trends and stats and generations, but I do know that this straight-up Boomer ain’t goin’ back in no box. :–)
Amy, I wonder if you “chronics” and we “dying now” people have something important in common: we weren’t just rummaging with a sorta-interested attitude, we really had motivation to find what REALLY matters.
April 27th, 2009 at 11:57 am
EXACTLY, Dave. I think that’s what we model ePatient types were trying to communicate at last week’s H20 conference: it’s different “doing health on the web” when you’re healthy, vs. doing it when you’re living with illness.
May 7th, 2009 at 4:39 am
[…] participatory class of citizen is not ready to go back in the box”. Come evidenzia in un recente post anzi, si estende anche agli altri ambiti della vita sociale, salute […]