The fight against cancer is real, strong, and growing—it even made President Obama’s State of the Union address in 2016. Billions of dollars are being spent for cancer research and significant advances are occurring regularly in areas such as Immuno-Oncology and Targeted Chemo Therapy. A subtle revolution is underway and growing strong with every passing month: The use of social media and new media channels to better engage, educate, and inform the cancer patient and their caregiver. Most importantly, these channels will allow for the deployment of potentially critical engagement tools to provide cancer patients and their caregivers with critical information and, in so doing, combat the often devastating emotional isolation of living with cancer.
As Lisa Masters (Cancer Survivor, Activist) writes on her blog on Huffington Post: “I know I have my friends and my family who love me. They would do anything I needed them to do. All I need to do is ask. But, they really do not understand how alone someone with cancer can often be. I suppose they can’t. I suppose only those of us with it can.”
In June 2014, the President’s Cancer Panel conducted a workshop to discuss “Cancer Communications in the Digital Era: Opportunities and Challenges.” Some of the key points that were discussed included:
- Popular media and cancer center advertising often create false hope about cancer cures despite the fact that cancers often recur, even with excellent therapies.
- Social media can be used to spread more accurate messages and help patients have more realistic expectations.
These themes very much align with the experience we had in 2013 when working on a social media research project for Metastatic Melanoma (MM). That “patient journey” project was designed to track the educational, emotional, and experiential journey of a MM patient from diagnosis to living with the disease. A key highlight from that study was recognizing the ability of cancer survivors in helping newly diagnosed patients work towards realistic yet uplifting goals, including but limited to NED (no evidence of disease). While cancer patients, especially survivors, are reluctant to use the word “cure,” we discovered that NED was a more clinically reasonable yet motivating goal.
Innovative Examples of Social Media Use for Cancer Patients
Social media has provided a great avenue for cancer patients to interact and learn more about their disease. The following examples of innovative social media use represent how the cancer patient and caregiver communities are able to get much greater engagement, support, and reliable access to information than ever before.
The Lung Cancer Community Chatting on Twitter
Dr. Jack West, MD, Web Editor, JAMA Oncology and Founder of Cancergrace.com, moderated a Twitter Chat on December 17th, 2015, using the hashtag: #LCSM (Lung Cancer Social Media). The one hour chat session was attended by HCP KOLs, advocates, caregivers, and patients to discuss a broad array of issues, challenges, and predictions that arise with regularity within the disease state.
While the advances with Immuno-Onc. Therapies were heralded by the participants (no surprise), it was interesting to observe that this community was looking for:
1. More tools to improve awareness around clinical trials;
2. Support and advocacy to eliminate or at least reduce the social stigma associated with lung cancer;
3. Establish more standards around molecular testing and educate clinicians about the same;
4. Create more cohesive and effective partnerships among patients, HCPs, caregivers and advocacies, primarily through social media induced interactions.
What is #LCSM? As described on their blog: “Founded on Twitter, the #LCSM community fosters social media collaboration among lung cancer patients, caregivers, family members, advocates, healthcare providers, researchers and charities. Its focus is to use social media in an innovative manner to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide.”
With the evolution of concepts such as Twitter Ontology, not only will projects like #LCSM be better able to disseminate more comprehensive information online, but will also leverage social media technologies in connecting patients, survivors, advocates, caregivers, and KOLs seamlessly and without the customary restrictions of time, place, and barriers to access.
Live Streaming Video Engagement with Patients
Another recent example involved a program that leveraged real‐time video streaming to engage and educate patients. The Bonnie J. Addario Lung Cancer Foundation (ALCF) launched a project called “Lung Cancer Living Room.”
As described on their website: “Every month our Lung Cancer Living Room – Bring Hope Home – A Patient Education and Support Series is made available to patients and their families. Through presentations by Lung Cancer specialists, physicians and researchers, this unrestricted forum covers a very broad array of topics: early detection, treatment options, molecular and genetic testing, clinical trials, drug discoveries, personalized medicine, nutrition, surgical equipment and procedures, up‐to-date news about advancements and more.”
Though in its infancy, social media and new media have begun the process of creating an effective and real engagement channel that provides intersecting communities of HCPs, KOLs, advocates, caregivers, and patients with enormously important opportunities for the sharing of knowledge and experience—with equal measures of emotional support as the wonderful byproduct of such programs.
In light of increasing acceptance of these channels by pharmaceutical manufacturers, these channels may very well evolve to be the most effective way to communicate among all of the interested parties in the oncology community, and most importantly, the patient.