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Social media may provide opportunities for cancer research, but caution urged
Adoption of social media has increased dramatically over time, with the number of worldwide users projected to increase from 1 billion in 2010 to 3 billion by 2021.
Mining this new form of derived data could be a novel frontier for personalized and precision cancer medicine, according to Mina S. Sedrak, MD, MS.
Sedrak — assistant professor in the department of medical oncology and therapeutics research at City of Hope — presented research on the mechanisms by which social media and mobile technology may enhance individual and population health behaviors and outcomes in cancer care during this year’s ASCO Annual Meeting.
“We know from prior literature that social influences play key roles in shaping health behavior,” Sedrak, a HemOnc Today Next Gen Innovator, said during an interview. “Multiple studies have shown that certain health traits — such as smoking and weight gain — correlate with social ties within a network.
“Peer-to-peer interaction has been demonstrated to influence individual behavior in many health-related settings,” Sedrak added. “However, there are a number of important challenges that we have to take into consideration. Social media is an incomplete, new and evolving area of research, and there remain many unanswered questions about how best to study these new modes of communication.”
HemOnc Today spoke with Sedrak about how social media may be used to study social influences on health behaviors, advance cancer research and enhance outcomes for patients with cancer, as well as the challenges that must be overcome before this novel approach toward personalized medicine becomes a reality.
Question: Can you describe the potential for using social media to study social influences on health behaviors?
Answer: Social media may be a new method for studying social influences on health behavior. Traditional forms of studying health influences and health behavior include the use of observational data. We often use large forms of data, such as a large cohort data set, and conduct secondary analysis to understand how peer-to-peer influences impact an individual or population’s behavior. Another way we can study this is by performing health behavior intervention experiments, through which we evaluate specific strategies that influence individual behaviors. Social media gives us new and powerful methods to look at larger cohorts of the population beyond what traditional data sets or smaller health behavior experiments may provide. Information from our daily interactions and exposures are now measured and recorded as digital footprints. This tapestry of information that includes data from social media, wearables, mobile apps and other digital health tools may enable us to learn about the role of social influences on health behaviors in ways previously unimaginable.
Q: How can social media be used to advance cancer research and enhance outcomes for individuals with cancer?
A: The use of social media platforms for cancer research is in an early, proof-of-concept stage. There are several potential opportunities for us to examine the value of this new mode of communication in oncology. One is the potential to use social media platforms to listen to the public discourse on cancer to better inform our understanding of population needs. Key questions include: Can social media be used to examine the opinions, attitudes, sentiments and reported norms of social behavior among individuals and communities? What are patients saying when they talk about their cancer experience online? What are physicians saying? And how are these dialogues different or similar? Can we identify communication patterns and gaps, such as access, speaking, processing and using information? And can we examine how all of this relates to cancer health disparities?
Another potential benefit is to link social media data with numerous data that we collect about patients, including genetic information, demographic and clinical data, wearables and mobile health. Does integrating all of these big data together help us better understand the cancer continuum? Can it help us learn more about our patients outside of a 20-minute visit that we have with them in the clinic? Can it help us better understand their disease and cancer experience, and how does this affect their community and the people around them?
Finally, social media may potentially be used as an intervention or strategy to influence health behavior and outcomes. Can we tap into the power of social networking online to improve patient and physician behavior? It remains unclear whether this is something we can or even want to do, but there is no denying that social media is a powerful tool, and we have many questions to answer about its value and utility in oncology.
Q: What challenges must be overcome before this new frontier in personalized medicine becomes a reality?
A: One challenge is the privacy of the data collected. Social media research needs to occur in a way that is transparent to patients and consistent with their preferences for privacy. Researchers need to seek institutional review board oversight, consider new techniques for anonymizing data from online sources, and address ethical issues in linking these data with identifying information, including sensitive medical or clinical information.
Another challenge is that findings from social media research may have limited generalizability. We have to realize that not everyone is on social media and not everyone is on every platform of social media; thus, we have to understand the audience on the specific platform we are studying. For example, Facebook may be more accommodating to older adults, whereas Snapchat may attract a younger population. For this reason, social media should not eclipse traditional approaches that we use for studying health behavior and social influences of health behavior. Rather, social media should complement other valuable, traditional methods.
Another challenge is that we do not have a standard way to study social media. We need to work on developing conceptual models and standard metrics on how to use social media to study human behavior. Is there a signal from the noise? What should be the methodological standards for analysis? We need to think about new methods to describe the current landscape and capture the digital footprints of conversations that occur on social media. We also need new approaches to understand how to create effective interventions that leverage social media to impact meaningful, clinical outcomes.
Another important consideration is that social media research is best done by a multi-disciplinary team of physicians, patients, patient advocates, computer and information scientists, behavioral scientists, communication experts and bioethicists. We need to bring together these stakeholders to one table to think outside of the box and use innovative methods to answer important questions and fill the gaps in knowledge about the value of social media in oncology.
Q: What must be done to overcome these challenges?
A: We need policy and oversight by institution review boards to help guide how researchers can safely and properly conduct this type of research, such as how we can use these data in a way that is both transparent to patients and consistent with their preferences. We also need examples in the literature of what works and what does not work when it comes to social media use in oncology. We need more people to go beyond talking about the potential challenges of social media in health care and begin examining and testing how we can use it effectively. Finally, we need more funding to support researchers in this new and rapidly evolving area in medicine.
Q: What should future research entail?
A: Further work is needed to understand how best to study social media and develop innovative methods that promote ethical, accurate and meaningful findings in this field. Several organizations and groups are beginning to tackle some of these questions in oncology. For example, the NIH held a special workshop in June that focused on social media and clinical trials. In addition, several of NCI’s National Clinical Trial Networks — including SWOG and NRG Oncology — have created the Digital Engagement Committee and Digital Health and Personal Connected Health Minisymposium. Stanford’s Medicine X initiative has organized multiple conferences to bring together key stakeholders to explore the potential of social media in the patient experience. More recently, a group of cancer specialists have formed the Collaboration for Outcomes using Social Media in Oncology (COSMO), with a focus on identifying the barriers to professional social media use among oncology providers and studying how to tackle them.
It is great to see large organizations such as NCI and many others take an interest in social media research. In fact, there are R21 (PAR-18-639) and R01 (PAR-18-638) funding opportunities through NCI for studying cancer communication on social media. As society continues to organize around a connected or digital way of life, there is a need for us to examine the value and application of social media and digital engagement in cancer care. – by Jennifer Southall
References:
Dizon DS, et al. JCO Clin Cancer Inform. 2018;doi:10.1200/CCI.17.00122.
NCI. At the crossroads of social media and clinical trials: A workshop on the future of clinician, patient and community engagement. Available at: dctd.cancer.gov/newsevents/20180706_social_media_and_clinical_trials.htm. Accessed on Aug. 30, 2018.
NRG Oncology. NRG Oncology’s Digital Health and Personal Connected Health Minisymposium. Available at: www.nrgoncology.org/portals/0/about%20us/meetings/july%202018%20meeting/minisymposium_digital_health_flyer_and_agenda.pdf?ver=2018-05-15-105623-163. Accessed on Aug. 30, 2018.
Sedrak MS. Leveraging social media to advance cancer research: Challenges & opportunities. Presented at: ASCO Annual Meeting; June 1-5, 2018; Chicago.
For more information:
Mina S. Sedrak, MD, can be reached at City of Hope, 1500 Duarte Road, Duarte, CA 91010; email: msedrak@coh.org.
Disclosure: Sedrak reports no relevant financial disclosures.