[Updated 1/23/14, 2:23 pm.] Social media hasn’t yet changed the world for biotech and pharma companies, but I believe this year is the year that will change.
For better or worse, these tools change the way people can communicate about specific things in business, politics, entertainment, and more. Online communities of cancer patients, physicians, and advocates are being built with little to no representation from drug developers. With researchers devoted to improving our understanding of cancer biology and improving patient experiences, pharma/biotech should be engaging in these communities as well, despite concerns that federal regulators haven’t established the rules. While no company wants to wade into murky areas, there are risks to being overly cautious.
As Dr. Farris Timimi, director of the Mayo Clinic Center for Social Media (SM), said, “the biggest risk in health care SM is not participating in the conversation.”
Social Media in Oncology
In oncology, patient-focused groups are leading the way in creating places and situations where patients can share and learn, not only from each other but doctors and researchers. Here are some prominent examples across a few social media platforms. (For a quantitative resource, see The Social Oncology Project 2013, undertaken by a communications firm in May 2013.)
Twitter Discussions
Two cancer survivors, Jody Schoger (@jodyms) and Alicia Staley (@stales), founded the Breast Cancer Social Media (#bcsm) community and were quickly joined by Dr. Deanna Attai (@drattai), a surgeon who treats patients with breast conditions. While #bcsm has a website with resources for patients, the real value is the community they have built around their weekly discussion (Monday evenings at 9 pm ET). When you go, take their advice about lurking seriously because their conversations are fast paced. During a recent chat, there were about 900 tweets in an hour-long conversation. Dr. Matthew Katz (@SubAtomicDoc) recently wrote about the pros and cons of this format. He also provided analytics from Symplur, which has a collection of healthcare Twitter discussions you can explore.
Individual Blogs
Blogs are a tool patients can use to share whole stories of any and all of the stages of their journey with cancer. These patient stories are personal, but they also provide a window into participation in clinical trials, a critical part of developing new drugs.
Lisa Adams, a mother of three who has Stage IV breast cancer, writes about her life and living with the disease. I found her blog around the time she started participating in a Phase II trial of Genentech’s GDC-0032 at Memorial Sloan-Kettering Cancer Center in New York. Adams shared what it was like to go through the “washout” period leading into the trial, the science behind the compound, how she felt during and after treatment, and what it was like for her physically and emotionally when the drug failed.
Websites
There are too many websites that coordinate cancer communities to list, but GRACE shows the potential impact of healthcare professionals who embrace social media. Global Resource for Advancing Cancer Education (GRACE) is a nonprofit that aims to provide reliable and current information to patients. GRACE does regular live webinars for patients and caregivers with a live question and answer session at the end. In addition, the oncologists write about specific cancers and new therapies. Having searched for information for loved ones, the GRACE forums are among the few I’ve found where oncologists provide direct feedback.
Provider and System Rules for Social Media
Healthcare providers and systems also face government regulations, including privacy rules, to contend with in sharing on social media. A group of social media-minded oncologists have written about the concerns specific to providers, including managing patient expectations as well as maintaining licenses. They were also involved in a paper that describes the potential of these tools to treat, to teach, and to learn. While not specific to oncology, the Mayo Clinic is widely recognized as a leader in adoption of social media, with a dedicated Center for Social Media to aid in communicating and community development. The experiences of individual providers and healthcare systems can inform strategies for increased industry engagement.
Where are the Cancer Drug Developers?
With cancer patients and oncologists engaged in online discussions that involve our drugs, where is the pharma/biotech participation? The question isn’t about
