Reflections: Patient Voices Network Forum Workshop, Consumer Health 2.0

This past Saturday, my health librarian colleague, Elisheba Muturi, and I delivered a workshop as part of a one-day conference for a group called Patient Voices Network.

The title of our workshop was “Consumer Health 2.0: Using social media to find and share health information.” In my mind, there are really two phases to the patient information lifecycle from the users’ perspective: 1) the challenge of finding relevant and high-quality information; and 2) sharing that information not only with those who need it most, but also with an undefined audience who may find it of use. Our contention is that the true value of social media for patients is that you can provide not only your own story (for moral support or catharsis) but also that the lessons you can share with a network, the “insider” information, may help someone who would truly be lost without it.

Overall, I think our workshop was effective, I really enjoyed hearing and learning from the audience, and I hope they learned from us as well. We created slides to guide our lecture portion of the afternoon, as well as a handout to support the reflection activities that we planned. These are embedded below in Slideshare.

Some observations:

  • We used a video to open the day that is a somewhat striking portrayal of two e-patient stories. How Sheba and I interpreted the video (one woman who successfully used online information to overcome her cancer, another who succumbed to misinformation) was not ultimately the way that the audience received it. Though I believe we listened and responded to the criticism appropriately, I was initially caught off guard by the unanticipated reaction.
  • The call for workshop proposals wanted high interactivity in their sessions and so we spent a fair amount of time planning activities for the audience to engage with the themes of health information sharing and social media. Ultimately, we went short on time and I offered the participants the choice or whether to engage in the scenario activity, or continue with a discussion of how patients and health organizations were using social media. They chose the latter, which really opened my eyes to how much talks like these are still needed at a “building awareness”-level.
  • I spent some time discussing statistics of ‘x amount of patients searching for health information’ that were simply less engaging than I had hoped. I will pare that down next time.
  • The audience guided the workshop to great effect. I was so happy to lead a group discussion on social media that was only loosely based on the outline we prepared. This is such an important topic, and the interest was obvious from the amount of both solicited and unsolicited participation we received throughout. I would much rather have half the workshop go un-presented, than get through everything having made no impact.

Lessons learned:

  • Plan early. Participants had to pre-register for sessions, so we were able to conduct a pre-survey that was a wonderful tool for gauging the skills and knowledge of the room. I would like to continue to tweak this tool for future use, as I am not sure we gained as much as we could have. We did use the results heavily in the planning process and it was an essential tool in crafting the final product.
  • Plan less. We wanted to show them everything, but in doing so, I think we may have diluted some of the messages. We were able to shift some of our content following the results of the pre-survey, but an absolutely killer focus would have been better than then comprehensive abstract and presentation we developed originally.
  • Plan better. Even from the very first proposal that we submitted, I think we  could have done a better job of defining the scope and deliverables of the workshop. Our goals were broad. I am very glad that a session was delivered on this topic at the conference, but in biting off too much, we may have only been able to scratch the surface.

Next steps:

  • Do more, in smaller chunks. Based on the feedback during the workshop, I think what this group needed was an interactive session introducing them both to the concepts and issues of a single, specific social media (patient blogs, patient communities, twitter, Facebook) and some hands-on training using and exploring that one platform. This would enable the wide range of skill sets in the room to benefit from one another better, and to provide the smaller scope we needed.

Overall, crafting the workshop with Sheba and her expertise in health literacy and patient advocacy was a great working experience that I sensed would work well since we met back in 2009. Additionally, it was a distinct pleasure to meet with such an engaging (and engaged) group of patients. It was clear that they are all poised to change health care from the inside, and I truly hope we were able to show them the potential for creating networks and becoming champions not only for their own health, but for others. I hope I have the pleasure of working with these patients and others in the future.

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