The power and pitfalls of using social media to study rare cancers

Abstract

Every year, roughly 1500–2000 women in the United States are diagnosed with a rare set of ovarian cancers known as granulosa cell tumors (GCTs), which carry a high risk of recurrence. Another 1300 individuals are diagnosed with adenoid cystic carcinomas (ACCs), which arise primarily in the salivary glands, commonly invade nerves, and metastasize to distant sites such as the lungs in approximately half of all cases.

Both cancers are rare enough that patients often struggled to connect with others facing the same malignancy until social media platforms such as Facebook helped them to connect through patient support groups. Such groups, in turn, have become critical resources for research efforts seeking to better understand the diseases and improve patient outcomes.

Amid the spate of recent warnings about the dangers of social media, including rampant misinformation, online groups have become the main vehicle for connecting patients and families affected by rare diseases. Physicians now regularly recommend Facebook groups to their patients, says Meghan Halley, PhD, MPH, a senior research scholar at the Stanford Center for Biomedical Ethics in Palo Alto, California. “It’s often the largest gathering of any patients with a particular very rare disease that’s available,” she says. “The extent to which the rare disease community has leveraged social media to identify other patients, share information, and provide social support is one of the few bastions of really good news in the social media space.”

Researchers have made good use of the space as well. In collaboration with the Granulosa Cell Tumor Survivor Sisters Facebook group, for example, a recent study based on an online survey of 743 patients revealed that 30% of respondents had recurrent disease, with one third of those recurrences occurring within 5 years of diagnosis.¹ The study represented one of the largest surveys yet of GCT patients’ treatment experiences. “Using naturally forming consumer groups may assist with developing the evidence base for care and supporting those living with GCT ovarian cancer,” the authors concluded.

Bioethicists such as Dr Halley, however, also have urged caution when relying on social media for bolstering research efforts. In a review of 120 social media–aided studies on rare noncancer diseases, she and her colleagues found that more than half relied exclusively on surveys, and the patient demographics, when reported, skewed toward female and White participants. “Despite its potential benefits in rare disease research, the use of social media is still methodologically limited, and the participants reached may not be representative of the rare disease population by gender, race, age, or rare disease type,” wrote the researchers.²

Rare cancers are tracked, in part, through the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) program. Classification, though, is complicated by the multitude of genetic and other risk factors that can dramatically alter the course of disease. The Adenoid Cystic Carcinoma Research Foundation (ACCRF) in Needham, Massachusetts, for instance, used its Facebook group to help recruit volunteers for research aimed at better understanding the contribution of a Notch1 gene mutation to a more aggressive disease trajectory in a patient subgroup.

As suggested by the Notch1 analysis, rare cancers can be subdivided by tumor location, implicated mutations, presence or absence of metastasis, and other factors. For ACC, further distinctions can be made on the basis of whether a cranial nerve has to be sacrificed, whether the patient requires special dental equipment, and which trials a patient may be eligible for, according to Nicole Spardy Burr, PhD, director of research at ACCRF. Each rare cancer, in effect, is an umbrella of related diseases that can follow markedly different routes.

To help make sense of them all, ACCRF has doled out 150 research grants since its inception in 2005. Dr Spardy Burr says that the foundation-backed Facebook page for patients, caregivers, and other supporters is part of a broader educational effort that includes a website, webinars, a quarterly email newsletter, and an annual meeting.

Being diagnosed with a rare cancer can be an exceedingly lonely experience, she says. “We’ve heard from some patients, ‘I’ve never even met another ACC patient,’ or ‘No one knew what ACC was when I was diagnosed.’” A Facebook group or other social media site can at least give patients access to others with a similar experience. “My hope is that Facebook is a resource that can make this process less scary,” she says. From a practical standpoint, the Facebook group has also aided the foundation’s fundraising efforts.

Patients with metastatic ACC may be eligible for clinical trials, depending on how and where the disease progresses. Through regular research updates, such as a list of open trials “that have a really strong scientific rationale,” Dr Spardy Burr says that the online patient community can aid accrual efforts as well. “We’re really lucky that our patients are motivated, and accrual to trials has not really been an issue in ACC,” she says.

As part of their discussions with researchers, Dr Halley notes that online communities can help to question the testing burden on clinical trial enrollees or the benefits of traditional approaches such as the use of placebo controls. The very nature of science, however, may require a careful recalibration of patient expectations. For rare cancers, in particular, the opportunity to be involved in clinical research is often the only opportunity for any sort of therapy, Dr Halley says. “At the same time, research is research because we don’t know if it works. We think the risks and benefits to actually study the question are in equipoise, but treating it as if it’s a benefit to the patient is contradictory to the fundamental nature of science.”

To help manage expectations, Dr Spardy Burr says that ACCRF shares information on the grants it awards as well as research updates from grantees and other studies pointing toward better therapies. “In my mind, our research updates provide hope by illustrating that we have really brilliant minds thinking about this rare disease,” she says. In the meantime, she adds, the foundation tries to distinguish drug screens and preclinical results in disease models from clinical data in humans and to help patients to understand the key differences in phase 1, 2, and 3 trials.

The potential bias of convenience samples from online communities also can be mitigated, in part, through patient registries. For rare cancers such as ACC, Dr Spardy Burr says that the effort has been complicated by the necessity of getting multiple medical centers to collect and share their data. As a workaround, the foundation has pivoted toward funding some institutional registries in the hopes that high-volume medical centers can help to address specific questions with data collected from their patients and that other centers then can help to validate the results with their own patient populations.

Subpar study designs and biased samples are not insurmountable problems for research conducted primarily with online patient groups, Dr Halley notes. Like any other research tool, social media has both strengths and weaknesses, and its effectiveness in efforts aimed at skin cancer prevention and behavioral interventions in adolescent health have offered some valuable lessons that could be applied to rare disease research as well. Ultimately, she says, researchers’ success may come down to thinking more creatively about better study designs, doing more work to diversify patient recruitment, and being more transparent about a study’s claims and caveats to maximize the potential benefits and understand the inherent limitations.