Tag Archives for patient information
April 27, 2011 | Writing
In response to the Wall Street Journal reporting on the results of some preliminary clinical research done by Patients Like Me refuting the effectiveness of lithium to treat ALS, e-Patient Dave tweeted:
— Dave deBronkart (@ePatientDave) April 26, 2011
@seattlemamadoc replied quickly:
@epatientdave I think of patientslikeme as a network. A social network. Don’t you?
— WendySueSwanson MD (@SeattleMamaDoc) April 26, 2011
I replied as well, with my initial thoughts:
@epatientdave interesting thought. Would you say it isn’t? I feel Pts like Me has many similar functions and affordances as other soc media
— Daniel Hooker (@danhooker) April 26, 2011
But by then it was too late. The premise had struck me: what if patient communities like Patients Like Me are somehow inherently different from other social media?
Social media is defined on Wikipedia as: “media for social interaction… the use of web-based and mobile technologies to turn communication into interactive dialogue… a blending of technology and social interaction for the co-creation of value.”
Though I haven’t left behind the idea that the basic functions (profile, public/private messaging etc.) and affordances (seeking/finding people, networking, friendship, community) are similar between the two, what are some areas of difference between Patients Like Me and Facebook?
- User Intent. Does the reason why someone joins a network matter?** Is it acceptable to examine a network through qualities about which we may have no direct knowledge? In this context, is it different to be a patient than a tennis enthusiast or a knitter? Don’t we call those networks social media? Does the nature of the community’s users change its definition?
- Data usage (i.e. a network’s reason for being). My second thought about the separation of Facebook from Patients Like Me is the usage of the demographic information collected. As evidenced by the clinical trial, Patients Like Me is somewhat of a clinical experiment. They are using the voluntarily provided patient information to be able to create a data set used to support (or challenge) other medical evidence. Do the scientific goals of Patients Like Me have an impact on its definition? But in that light, Facebook’s sale of demographic data to their marketing partners may seem an even more sinister experiment. At least Patients Like Me is generally open about it.
I am still working through the areas of difference between the two networks and their significance. And though these distinctions may seem pedantic at this point, I have a sense that seeking deeper definitions of these platforms may increase in value as the critical discourse around social media advances. As more people become aware of these tools for use in a health care context, we will require ever more robust ways of describing what, exactly, they do and why, exactly, they are having such a profound impact on so many people’s lives.
**Not to go all English-major on you here, but in a similar way that reader-response critics responded to formalism by allowing room for the “user” experience in the interpretation of a work, so formally examining a social (net)work solely as a functional piece of software may be seen as insufficient in describing its true value or experience.
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.
- 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.
- 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.
- 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.