Connected Health: Patient networks panel

My research findings and their connection with real-life health care were given new life when I discussed them with Lisa Gualtieri, Josh Bernoff, Tim Edgar, and the audience at the Connected Health symposium. If you’re intrigued, watch a video of the panel and look for these highlights:

  • Minute 2: Josh Bernoff’s opening remarks included advice about how to create a social application for life sciences without getting fired and pharmaceutical companies’ ever-decreasing appetite for risk.
  • Minute 7: I talked about our increasingly mobile-enabled population (that is also increasingly being diagnosed with chronic diseases).  Imagine a future designed by BJ Fogg and Roni Zeiger: a patient won’t get a new prescription without also being given an immediate, easy-to-execute opportunity to join an online patient network. (Read more: Patient Communities… at Walgreens? and No social network Rx? Malpractice!)
  • Minute 10: Lisa describes her research into patient blogging, where people share intimate details and remain dedicated to the project even if they have very few readers. Measuring health outcomes is her ultimate goal.
  • Minute 18: Tim asks the panel to describe lessons learned and Josh admonishes clinicians to know what resources are available to patients these days, singling out CaringBridge as an example.
  • Minute 20:  I talk about how some online communities are about making you feel loved at 2am – and that’s great – but then there are the patient networks that focus on science, on outcomes, on drug discovery. (Read more: Patient Communities: Which Way Forward?)
  • Minute 23: Lisa talks about how social media and health education are not part of medical school curricula.  She points to intermediaries, such as medical librarians, to bridge the gap between patients and providers.
  • Minute 25: I talk about what can’t scale (health professionals, medical librarians) and what can scale (online searches, peer advice).  Josh Bernoff then describes his ideal model for providing information and asks for audience participation (thank goodness, because they were an incredibly well-qualified group to respond). If you’ve made it this far in the video, just keep watching to the end and take notes on the resources recommended by audience members — truly, I got as much out of listening to them than listening to my colleagues on the panel.

Thanks again to Joe Kvedar, Joe Ternullo, and Michael Barrett, who invited us to speak at the Connected Health symposium.  I’d welcome anyone’s questions or comments about the panel (or overall event).

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5 Responses to “Connected Health: Patient networks panel”

  1. […] My inspiration for this idea comes directly from the work of Nicholas Christakis and James Fowler, who observe that altruism spreads in networks, but I’m adding my deep knowledge of consumer behavior online, which most recently got pushed and prodded on a panel about patient communities. […]

  2. Thanks for writing this since the video is long (even though the session seemed to fly by). I am writing a longer paper about the research on patient blogging but can include a link to an abstract from the CDC Health Communication, Marketing, and Media Conference in August: Communicating the Experience of Illness through Patient Blogs, http://cdc.confex.com/cdc/nphic10/webprogram/Paper24880.html.

  3. Annie Stith, e-Patient says:

    Hey, Susannah!

    I really like the way you pointed out what topics were covered, and sometimes a bit of a summary, with links. [Note: I got Error 404’s for Patient Communities… at Walgreens?, No social network Rx? Malpractice! and Patient Communities: Which Way Forward?]

    I have just a couple of comments. I have a problem with expecting physicians “to know what resources are available to patients these days.” Doctors are already expected to keep up with so much — new conditions, new scientific information about previously discovered conditions, new medications (whether in clinical trials or approved by the FDA), new side effects of previously approved medications, new treatments other than medication… I already have to keep my PCP up to date on new research and “alterative” treatments for my FM (like acupuncture or vitamins). And I’d appreciate my appointments not getting shorter than the current 20 minutes. (What’s a “medical librarian?”)

    There seems to be a lot of talk about “patient communities.” Is this the same as what we call Support Groups? Or is the thiking more along the lines of ” PatientsLIkeMe.com ,” which is a combination of both a Support Group and data gathering site? (If you’ve never seen the latter, I’d suggest a visit.)

    If the discussion is about attempting to use Support Groups for any kind of solicitation, it’s banned in most forums. If it’s about changing the nature of the groups, I think there will be a lot of resistance. Many group members are nearly addicted to their groups as is, and therefore very protective of their groups.

    That’s all I’ve got until I get some sleep (I hope) and go into the archives for those three links.

    Annie

  4. […] My inspiration for this idea comes directly from the work of Nicholas Christakis and James Fowler, who observe that altruism spreads in networks, but I’m adding my deep knowledge of consumer behavior online, which most recently got pushed and prodded on a panel about patient communities. […]

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