At the European Breast Cancer Conference (#EBCC11) held in Barcelona in March our board member and advocate Marie Ennis O’Connor (@JBBC) spoke about the power of social media for connecting patients and helping them to achieve better outcomes. Marie, a breast cancer survivor, experienced how the lack of information can have harmful consequences. At the moment of her diagnosis, she was not informed about fertility preservation with the consequence that she lost the opportunity to become a mother. Today she advocates for breast cancer patients and she has become a renowned social media specialist and speaker.
Peer to peer communication is vital for patient empowerment. “Before the Internet connected people from every corner of the globe”, says Marie, “many patients experienced their illness in isolation. Humans have an innate desire to feel connected with others who live life through similar lenses. The Internet, and social media, in particular, has lessened this sense of isolation.”
Well-known patient advocates like Dave deBronkart (e-Patient Dave) and Andrew Schorr have shared how the internet helped them to connect with peers and saved their lives. Breast cancer patients have built a powerful online community where they share knowledge, experience and they help each other. There are numerous breast cancer Facebook groups and Twitter accounts that put patients in touch and facilitate the conversation. One of them is Breast Cancer Chat, a Twitter account that organises a chat every Tuesday (9-10pm GMT) around the hashtag #bccww
Another strong breast cancer advocate in social media is Joanne Taylor (@abcdiagnosis), a secondary breast cancer patient from Manchester. Joanne has over 12,000 followers on Twitter and she has managed to put metastatic breast cancer on the map. This community uses hashtags like #metastaticBC #stageivneedsmore and #breastcancerrealitycheck to reveal the reality of metastatic breast cancer and to advocate for more research.
As we can see, “patients have moved from being a passive recipient of care to being an active participant in their health,” in Marie’s words. This empowerment facilitated by the internet is even more important in the field of rare diseases, where patients feel completely alone. Having a disease that affects one in 40,000 or one in 100,000 people makes it very difficult to find someone like you. Rare disease patients from all over the world have started Facebook groups to communicate and help each other. These communities share information about symptoms, treatments and they offer support. So valuable is this information that is being used for researchers to gain more knowledge in the difficult field of rare diseases.
“In the case of rare diseases, where doctors simply don’t have the answers to patients’ questions due to low patient numbers and, consequently, insufficient research into the disease, it is the patients themselves who are banding together to find the answers they need,” says Marie.
It is clear that patients have in social media patients a priceless resource. To quote Susannah Fox (@Susannah Fox), Former Chief Technology Officer at U.S. Department of Health and Human Services: “the most exciting innovation of the connected health era is people talking with each other.”
Teresa Bau, Communications Director at Patient Empowerment Foundation.
*More information in this article by Marie Ennis O’Connor: Patient Communities Engendering a New Social Health Era