iStock_000055043644SmallSocial media is an incredibly powerful channel for a myriad of reasons. For pharmaceutical companies, two reasons in particular spring to mind: One is the ability to use social-media listening to gain insights into stakeholder behaviors and needs. Another is the ability of social media to extend the reach of content and improve stakeholder awareness of an issue, for example via a disease awareness campaign.

In my opinion, however, the real power of social media is its impact on patient’s lives. Social media empowers patients to take more control of their own health, by providing access to information and shared experiences. As well as informational support, it also offers emotional support, which can play a crucial role in a patient’s well-being.  

In the case of rare diseases, social media can even go so far as to save lives, by making patients aware of the disease and speeding up diagnosis, putting them in contact with appropriate medical care, as well as offering hope through clinical trials and access to treatment. This was certainly the case for Leo Kogan, whose life was saved thanks to his mother posting photos of him on her Facebook page. Leo’s doctor had started treatment for what he thought was a routine infection, but Leo got worse. His mother, Deborah, charted his progress by posting photos online, and a couple of health-care professional friends saw them and suggested it may be a rare condition called Kawasaki disease. They told her to take Leo straight to hospital. The hospital confirmed it was Kawasaki disease, and Leo received the urgent treatment he needed.

As in this case, social media is starting to offer rare-disease patients and caregivers access to information, contacts and support that they would never have had before. Whereas previously these patients would often be isolated and powerless in their health, they are now able to mobilize via social media and form powerful advocacy groups. Through social media these groups are starting to organize and raise funds for clinical trials, to lobby industry and government for access to treatment and to provide an invaluable support system for other patients.

The impact this is having on individual lives in incredible, and this is where the true power of social media lies. What other channel can offer this level of impact or indeed save lives? In an industry where we are all working to improve patient outcomes and trying to save lives, we should be embracing this channel.

To learn more about the power of social media, click here to watch a video of my recent discussion of the topic.

Topics: social media, Alexandra Fulford, Pharma, rare diseases