Social Media Communities: Blazing a Trail to New Cures

By Kathleen Hoffman, PhD, MSPH

The press makes big news of misinformation spread on social media, but two virtual conferences last week — Patients as Partners USA and Collaboration for Outcomes using Social Media in Oncology (COSMO) — featured speakers who became patient advocates for their diseases after participating in social media discussion groups. These speakers found and now share valid information in health communities online, and demonstrate, yet again, how participation in social media has expanded scientific knowledge and research.

The Patients as Partners USA conference, a “3-day festival of ideas from patients, pharma, and FDA on how patient engagement and involvement get done,” featured keynote speaker, and patient advocate, Oriana Sousa. Sousa’s topic, “Fighting to be a True Stakeholder in Clinical Care and the Impact on Clinical Research,” described her survival of hypercalcemic small cell ovarian cancer (SCCOHT), a rare and deadly form of cancer.

In 2011, Sousa convinced her medical team to try immunotherapy, an experimental treatment she learned about on a closed Yahoo! patient discussion group. Her survival, along with that of several other women who received immunotherapy for SCCOHT, spawned new clinical research into treating cancers with immunotherapy.1

Sousa said, “Since the very beginning, this [online discussion group] has had a lot of impact on my choices… it helped me a lot to find a community of my own type of cancer. At [the age of] 22, it’s normal that you don’t have the right references and you don’t know if [your medical teams] are doing the right thing for you or not.”2 A crucial turning point in her treatment journey involved following her discussion group’s life-saving guidance to pursue further testing: only by doing so did she discover her cancer relapse.

Her trust in the group fueled her empowerment. Member discussions of immunotherapy led her to request it for herself. Although her physicians discouraged her, she persisted searching for oncologists willing to prescribe the treatment. She found an enthusiastic treatment team in Spain. “In Spain it was totally different.” she said. “The surgeon there said, ‘We need to fight for you.’” This team’s patient-centric approach saved her life.

“It is very important to share our goals and our voice because it makes a lot of difference for other patients. When you read a scientific paper, you don’t see the reality of the patient.” Now, in her role as patient advocate, she reads articles with an eye toward sharing scientifically credible information with other patients worldwide through social media.

Similarly, speakers at the COSMOS conference described the impact their participation on social media had on guiding people toward legitimate resources, like clinical trials, and away from misinformation.

In a panel discussion called “Patient Engagement in Social Media: When the Doctor is no Longer the Expert,” Janet Freeman-Daily, a co-founder of the #LCSM Twitter Community, stage IV lung cancer survivor, and Inspire member, shared her social media story.

In 2010, a fellow member of the American Lung Association’s Lung Cancer Survivors support group on Inspire shared a link to the Lung Cancer Mutation Consortium, a clinical trial doing free genetic testing. In 2011, Janet shared this same clinical trial online:

It appears participants who have Stage IIIB/IV adenocarcinoma of the lung can have their tumor tested for genetic markers, and may be notified if a trial comes up that addresses their particular genetic marker(s). This may be an inexpensive way to get your tumor tested, and a great way to contribute to the overall knowledge of the beast.

Her involvement in this Consortium made all the difference to her survival. By 2012, the same Consortium began testing samples, including her own, for other mutations.

[Dr. Bunn] told me the University of Colorado at Denver now tested for 4 new mutations, including ROS. They will test my remaining slides for ROS and RET–Dr. Bunn says I have a 10-20% chance of having one of those mutations.

Later that fall she reported to her fellow members,

Dr. Bunn emailed me: I have “an impressive ROS1 rearrangement”! They have an opening in a Xalkori trial for me, if I want it.

She updated her status in early 2013,

A PET/CT scan shows one of my two lung nodules is gone, the other is shrinking, and no new hot spots have popped up. Xalkori is working! The side effects (edema and constipation) are far easier than chemo. Hoping this drug will keep working for a LONG time.

This genomic trial saved her life.

The depth of data social media participants have been willing to share in oncological studies is remarkable. Corrie Painter, PhD, from the Broad Institute at MIT & Harvard, presented a study showing the impact social media can have on clinical study accrual and rare disease research. The “Count Me InAngiosarcoma study used social media to recruit participants, who then remotely shared their medical data and tissue samples. Only about 300 people per year are diagnosed with the disease.

“Over 18 months, 338 patients registered for the ASCproject, which comprises a large proportion of all patients with angiosarcoma.”3 With this level of participation, the research team performed whole-exome sequencing (WES) of 47 tumors, which ultimately “…revealed recurrently mutated genes that included KDR, TP53, and PIK3CA.”3 Going forward based on this successful model, “Count Me In” remotely-sourced projects now include data and samples volunteered by patients with metastatic breast cancer, angiosarcoma, prostate cancer, esophageal and stomach cancer, brain tumors, and osteosarcoma.

Both conferences showed that patients engage with social media as part of their health care, and use it as a resource for networking as well as a source for information. Social media is lowering the barriers to diversity, geographic isolation, and patient burden — all traditional problems in site-based research. As far as their privacy is concerned, patients expect their boundaries to be respected; they are willing to share their data and feel empowered to do so when the request is up-front and their anonymity is preserved.

These stories, and so many that are shared on Inspire, support the power of social media for good. [See “Why peer-to-peer online patient communities are important to patients, caregivers and pharma,” “First Breast Cancer “Durable Regression” with Immunotherapy: Judy Perkins, Inspire member,” and “Where Do You Start When Searching for Exceptional Responders” for more examples.] Their experiences propel Inspire’s mission to accelerate life-changing discoveries through our vital community of connected patients

Conference speakers demonstrated that social media can be a source of accurate and actionable information, and that it is a patient-centric resource for advancing science and saving lives.

To learn more about social media and patient empowerment, see Inspire’s Webinar, Patient Reflections on Their Journey: How Social Media Health Communities Affect Their Experiences.

Inspire has collected survey data from over 30,000 people with chronic medical conditions about the impact of COVID-19 on their lives and their perceptions and experiences with the COVID-19 vaccines. Their data can be seen on our interactive dashboard.

See the dashboard, “Covid-19 HealthJourney”

See the dashboard

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