Research Ethics In Social Listening

In recent years, clinical researchers have adopted social listening as a technique while conducting social media studies to gain a deeper understanding of diseases and further drug development efforts. Social listening refers to a passive approach where the research team does not provide any prompts or questions but simply ‘listens’ to the narratives posted by people. Data is aggregated from various posts made on social media sites such as verified patient communities or Twitter or disease specific blogs.         

The unsolicited, voluntary social media posts often contain real-time updates of disease progression and patient journeys. Investigating social media data can reveal trends in patients’  knowledge of a certain disease at a certain stage, their thoughts or approach in dealing with the disease, and coping strategies. The information gained from social media data can form valuable insights that help healthcare organizations such as hospitals and pharma companies to create positive patient experiences. Additionally, support for patients and caregivers or group interventions can be delivered via social media. Social media data can even  help public health agencies to develop public health policies. 

Although the benefits of social media research are evident, the risks associated with social listening techniques cannot be ignored. Most research organizations are careful about maintaining patient privacy. But since the standards for privacy were not clearly defined by the regulatory authorities, loss of patient confidentiality or revealing information inadvertently was a real possibility. The scientific community has debated about social media research ethics for over a decade. In 2011, the US Food and Drug Administration (USFDA) had issued guidelines for pharma companies regarding their use of social media but it did not address social listening. In current times, the US FDA themselves have used natural language processing (NLP) technology and social media for pharmacovigilance purposes but no clear guidelines for social listening were available until the recent past. The FDA has now provided further guidelines about social listening.

Medical product information can be gathered from various sources such as animal toxicology trials, pharmacogenomic studies, registries, clinical studies, and product quality reports. The FDA  emphasises  that social media, in particular social listening techniques, can be a valuable source in gathering information about medical products. Social listening techniques can also be useful for other agencies such as the Center for Veterinary Medicine and the Center for Food Safety and Applied Nutrition. According to the FDA, it is possible that social listening techniques are more efficient than traditional post-marketing surveillance and it has the potential for faster signal detection. The FDA acknowledges that social media data can be used in a variety of studies such as qualitative, quantitative, and mixed methods.    

In its recent Guidance document, the FDA provides three important non-binding recommendations or guidelines. First, it suggests that social media researchers need to include a wide variety of social media sites. Some websites may appeal to a certain demographic of  individuals. Including data from only such sites may introduce a bias in the outcomes of a research study. To improve the generalizability of the study outcomes, many different social media sites need to be included. Next, it notes that researchers may have access to identifying information on verified patient community sites. But when the research topic is sensitive in nature, anonymous posts may be included in the study to protect patient privacy. Lastly, the FDA suggests that researchers need to clearly state limitations of the study when they affect data integrity e.g., a lack of mechanisms to verify the diagnosis.  

At RLS, social listening techniques combined with advanced natural language processing have been used effectively to study diseases of the skeletal system such as ankylosing spondylitis and psoriatic arthritis. Even prior to the issuance of FDA guidelines, respect for persons or patient privacy and confidentiality has been and will always be one of our core values. Our research team stays up-to-date on various guidelines provided by the regulatory authorities such as the FDA, Health Canada PRCI & the EMA, including policy 070 and EU CTR 536. Furthermore, Real Life Sciences deploys industry leading technology surrounding Quantitative Risk Modeling and Assessment for Clinical Trial Transparency and Disclosure. While working with various organizations, our team ensures that studies are compliant with institutional review board’s (IRB) requirements. Social listening techniques combined with AI technology and categorization frameworks such as SPEC-F allow us to understand diseases better and expedite drug development.


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