Participation Matters

In politics and in health care, participation matters as much as access.

The passion we saw in the political campaigns last year is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. What are you doing in your work to harness that passion?

Pew Internet Project data is often used to benchmark where we are with tech adoption in the U.S.  Here is where we stand:

79% of adult Americans have access to the internet.

63% of adults have broadband internet connections at home.

56% of adults access the internet wirelessly on some device, such as a laptop, cell phone, MP3 player, or game console. When we include mobile access in our definition of the internet user population, the differences between African American adults and white adults disappear.

But where do we stand in terms of participation?

60% of e-patients (internet users who go online for health information) have engaged in some sort of social media related to health and health care, mostly consuming information created by other people, not posting their own thoughts.

42% of all adults say they or someone they know has been helped by following medical advice or health information found on the internet. That’s an increase from 2006 when 25% of all adults said that.

We ask the opposite question, but find it is a flat-liner: 3% of e-patients say they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006.

However, while mobile adoption is creating greater access and participation among African American adults, for example, there are other groups who remain disproportionately offline, such as people living with chronic disease or disability. They may be missing out on opportunities, but just as importantly, we are missing their voices in the conversation.

As the Society for Participatory Medicine moves forward, these twin issues of access and participation should be central to the conversation.

Again, what are you doing in your work to harness the passion of patients and caregivers? How are you going to help bridge the access gap, but even more importantly, the participation gap?

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Comments

12 Responses to “Participation Matters”

  1. SusannahFox says:

    What are *you* doing to harness the passion of someone trying to save a life? New #WhyPM post: http://bit.ly/UaMtD

  2. ePatientDave says:

    RT @SusannahFox: What are *you* doing to harness the passion of someone trying to save a life? New #WhyPM post: http://bit.ly/UaMtD

  3. Thanks! More evidence of my “SFox Rocks” maxim. :-)

    This Pew data screams to be in boldface:

    42% of adults know someone who’s been helped by medical information on the internet.

    3% know someone who’s been harmed.

    While I completely understand providers’ concerns about the risks of bad info, the evidence seems to be that people are smart enough to find the good stuff and not get hurt by the bad stuff.

    Let’s all do everything we can to further that trend: get better at providing and finding good stuff, and help each other get smarter about avoiding the bad stuff!

    Me, when I find something interesting, if it’s non-trivial I bring it to my docs – and discuss it with peers. Nothin’ like cross-checking real-world layman’s experience and professionals’ perspectives!

  4. Gilles Frydman says:

    Susannah,

    Thanks for continuing to document the unstoppable rise of the (better) informed patients.

    But, as usual, I am raising the issue that has been disturbing me for years. You, like most people, speak of the e-patients as if they are representative of the general population. But you remember that the study conducted by Barbara Rimer et al on some of the ACOR lists showed that 97% of the users were Caucasian.

    The Internet is faceless and is helping us forget that for a variety of reasons, including many cultural ones, some minorities are singularly underrepresented in the world of the rising e-patients.

    The Society for Participatory Medicine MUST deal proactively with this issue, from the Get-Go. Otherwise we will have meetings about participatory medicine that will look like most of the medical meetings I have attended over the last 15 years, where the voices of patient advocates representing minorities are never heard.

    Thankfully, the SPM is just beginning. This is offering a rare opportunity to build a medical society much more in tune with the social, cultural and racial diversity found today in the American population. We should all jump at the opportunity. Will you ever look into cultural differences for your Pew research?

  5. Gilles & Susannah, what about Susannah’s note that “When we include mobile access in our definition of the internet user population, the differences between African American adults and white adults disappear”? Is that relevant to Gilles’s concern?

  6. Gilles Frydman says:

    Dave,

    I honestly don’t think it does. I have been conferring lately with African American professors and they tend to believe that the issue is really NOT technological but a profound cultural one. A few years back we were witness to the extent of this cultural disconnect. I haven’t seen any sign that we have done work to re/create the necessary environment that would help convince African Americans that they can trust the medical system and any of its proxies.

    Like it or not, we, the producers of resources that empower patients are also proxies of the American medical system.

  7. Susannah Fox says:

    Thanks to both of you for highlighting the points I really want people to get — there is a difference between access and participation.

    Pew Internet’s wireless data has recently been heralded as a sign that the “digital divide” between whites and blacks is closing. But is it truly closing in terms of using the internet to create, gather & share health resources?

    People concerned about access to health information & resources should also look beyond our traditional definitions of digital inequality. It’s not just race & education that predict access, but health status too. The Pew Internet Project’s latest data shows that there has been very little progress in the last two years when it comes to internet penetration among people living with chronic disease and disability.

    I would love to include cultural questions in my research, but meantime, I’ll also look to other sources such as the work being done by the Greenlining Institute, the Joint Center for Political and Economic Studies, and the many academics & government officials who are studying these issues.

    See, for example:

    http://broadbandimperatives.wordpress.com/

  8. Susannah Fox says:

    Also, if you have doubts about whether individuals can have an effect on the population, I recommend taking a look at these two books:

    The Social Atom: Why the Rich Get Richer, Cheaters Get Caught, and Your Neighbor Usually Looks Like You, by Mark Buchanan
    (blog: http://thesocialatom.blogspot.com/)

    Connected: The Surprising Power of Our Social Networks and How They Shape Our Lives, by Nicholas A. Christakis and James H. Fowler
    (New York Times article: http://www.nytimes.com/2009/09/13/magazine/13contagion-t.html?pagewanted=all)

    If happiness and obesity are “catching” then maybe health engagement is too. Tell your friends (and the friends of your friends).

  9. ePatientDave says:

    Man, check out the evidence in @SusannahFox post "Participation Matters." #WhyPM indeed! http://bit.ly/UaMtD

  10. [...] increasingly expect to be able to comment on and easily share information.  And it turns out that participation matters as much as [...]

  11. [...] e-Patients states that Patients w/ Chronic are disproportionately offline [...]

  12. [...] increasingly expect to be able to comment on and easily share information.  And it turns out that participation matters as much as [...]

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