In the last few years, technology has created new opportunities for patient support and education. For example, this recent post on MSKCC’s blog On Cancer highlights the Center’s online education programs and virtual support groups, which allow patients and caregivers an opportunity to connect from a distance. This post will discuss some of the ways social media such as blogs, Twitter and message boards are allowing patients to share their experiences, learn more about their diseases and find resources for coping.
While some hospitals, including MSKCC, offer these online support communities, there are many other such communities online. Cancer Support Community offers an online community and in-person groups, and SmartPatients, founded by a former Google executive, is intended for cancer patients and caregivers. Patients Like Me allows patients with rare diseases the opportunity to connect. (Remember, it is important to read and understand the user agreements and privacy policies on patient sites, and as always with any health information, discuss your care with your doctor.)
The Cancer Support Community, among others, helps patients set up blogs for communicating with friends and family members as well. CaringBridge and What Matters Now also have mechanisms in place to help caregivers and friends arrange to provide meals, handle chores and otherwise support their loved ones dealing with an illness or other crisis. Writing can have a therapeutic effect for patients dealing with illness, and MSKCC’s Visible Ink Program supports patients interested in feedback from experienced writers, editors and teachers on writing projects.
Other social media can provide a space for support and learning among patients and healthcare providers alike. As the media landscape changes, prominent hospitals (@MayoClinic for example) and individual doctors are reaching out and participating in the discussion of healthcare and health issues with information on Twitter, YouTube and Facebook. While the public nature of the internet raises concerns about privacy and scams (discretion and critical evaluation are important), it also offers opportunities. The Breast Cancer Social Media group is a community of patients and healthcare providers who participate in weekly moderated Twitter chats at the hashtag #BCSM. The BCSM group is just one example of how individuals have used the tools provided by new technologies to reach out to help themselves and each other.