October 21, 2010

Lessons Learned: Online Patient Communities

Susannah Fox participated in a discussion of how the maturation of online social networks, patient communities, and patient blogs affects health and health care.

Watch a video of the 45-minute discussion, including 15 minutes of Q&A with the audience. 

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: Susannah Fox talks 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 Gualtieri 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 Edgar 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:  Susannah talks 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: Susannah talks about what can’t scale (health professionals, medical librarians) and what can scale (online searches, peer advice).  Josh 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 – and add your own observations in the comments on e-patients.net

For more information about the panelists, please see:

Lisa Gualtieri:  blog, Twitter page

Josh Bernoff: publications, Twitter page

Susannah Fox: blog, publications, Twitter page

For more information about the event, please see: http://www.connected-health.org/events/symposium-2010.aspx