KEY TAKEAWAY: Breast cancer patients’ perceived knowledge increases and their anxiety decreases by participation in a Twitter social media support group. There are other opportunities as well, but not for all health conditions.
The study, from the Journal of Internet Research, is a clear indication that certain groups of patients want and need support. Take this post from a woman named Jenny, who has MS, “wondering if I should tell my boyfriend I have MS”. There were a lot of responses and advice and Jenny said “thank you all” in her reply.
Patients need support in dealing with their health problems, but for the most part pharma has been missing from the conversation. I researched social media for a client not too long ago and found that just the simple act of patients connecting with patients can in fact do a lot to help them deal with the anxiety of trying to work and live with chronic conditions.
When I launched Sarafem.com we included a patient community and in the first week had over 250 posts from women who wanted to connect with other women around PMDD. So the question remains, why can’t pharma do more to be part of the conversation and connect these people? Maybe it’s because..
1ne: They are afraid of the big bad FDA.
2wo: They can’t quantify an ROI.
3hree: They don’t have anyone in house who can manage social media.
4our: Regulatory and legal have said “no”.
There are some organizations that do have a good social media patient presence, Sanofi comes to mind, but most pharma social media feeds are followed by industry insiders not patients because they are more of a PR feed.
With all the abundance of health information online patients still need emotional support and empathy and pharma, it seems, is NOT part of that conversation.