Patients Organizing via Social Media

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 (http://www.inspire.com), 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.

11 comments on “Patients Organizing via Social Media

  1. Good stuff Dan. Thousands of hours outside of doctors’ offices never get recorded or interpreted… I’m glad strong ePatient leaders are getting together to discuss how they can become part of the care team and advance medicine together.

  2. Thanks for that link, Dan. The SCAD case is a seriously fascinating one. It’s already become my go-to example of the “e-patient” movement. There’s certainly some very encouraging stuff coming out of cases like this.

    I’m not a medical expert, but I would think this “Patient Initiated Research” would benefit greatly from speed. Before the Internet and social media, researchers always had to take the lead, and the delay between discovery of new treatments and the dissemination of said treatments would have been much longer.

    Good stuff here!

    Jason Boies
    Radian6 Community Team

  3. ncscadsurvivor

    Thanks, Dan. It was great meeting you at the Summit last week, and gratifying to hear that our patient voices are welcome at the table.

    • Laura, you are inspirational! Thanks so much for attending the Summit and for sharing your story. I look forward to our next meeting!

    • Laura, I attended the conference but did not get to meet you. I’d say that not only are your voices welcome, they’re essential. Thank you so much for your investment in this process. You’re helping more than SCAD survivors.

      Thank you, Dan, for this post. Great resource!

  4. Hi Dan … seconding Laura’s comment. It is very motivating to know that people truly care and are evaluating the possibilities of patient-initiated research. Thank you for supporting our story!

    • Thanks Katherine! It is a pleasure to share such a great story of patient empowerment. I appreciate you sharing your story at the Mayo Ragan Summit.

  5. Pingback: A Catalog Blog Posts From the Mayo Ragan Summit – October 2011 « The Healthcare Marketer

  6. Pingback: Video: Stop the Heartbreak of Spontaneous Coronary Cartery Dissection | The Healthcare Marketer

  7. Pingback: A Day Dedicated to ePatients | The Healthcare Marketer

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