As I mentioned in a prior post, one highlight of the Mayo Ragan Health Care Social Media Summit was definitely the patient panel. The panel was titled “The power of the e-patient.” Katherine Leon and Laura Haywood-Cory spoke powerfully about their experiences as survivors of spontaneous coronary artery dissections (SCAD), and their efforts to network with and organize other women who had survived SCAD. In the end, their efforts lead to patient initiated research (a new buzz phrase) at Mayo Clinic. This is a remarkable story about the patient’s ability to impact the research agenda. If you’d like to read more about this, there’s an excellent Wall Street Journal article titled “When Patients Band Together.” Every conference like this should find a way to put the patient in the foreground! Congratulations to the folks behind the Mayo Ragan gathering who had the vision to make this happen.
In a strange coincidence, John Novack, the Communications Director at Inspire, contacted me more than a week ago to share a report he has written titled The SCAD Ladies Stand Up: Stories of Patient Empowerment. If you’re not familiar with Inspire, it is a network of online patient communities. You can download the report by clicking this link: http://bit.ly/n4PK1K. Below is an excerpt from Inspre’s special report.
“This special report is not intended to delve into the Mayo Clinic SCAD project itself. The Wall Street Journal, Mayo itself, and other media have covered that topic well. Rather, through first-person narratives of patients, this is a closer look at how several members of the WomenHeart Support Community on Inspire banded together and started something special. We also solicited the perspectives of newer members, who found the community through online searching and the publicity from the announcement of the Mayo project. While Katherine and Laura are from the US, SCAD Ladies are from the UK, Canada, New Zealand, Sweden, and elsewhere. As Laura wrote in her essay (see p. 15 of the report), “Online tools and social media can help create a patient community that spans countries and oceans, and with that support backing you up, reach out to the people who can research your condition.”
Although it seems odd to say, too often healthcare marketers and communicators have neglected the patient (and the physician). Social media has empowered patients and will continue to do so in ways we may not expect. It is clear from the example of the Katherine Leon, Laura Haywood-Cory and the SCAD ladies, it’s time to tune in and pay attention. I urge you to read the report from Inspire.com.