Social Media and Patient Communities

Social media has been around for about eighteen years now. More and more patients are using social media as an outlet. However, the role of social media data and verified patient communities in Real World Data/Real World Evidence is still evolving. Real World Data (RWD) is observational data from real world settings such as electronic health records (EHR), billing or disease registries. Real World Evidence (RWE) is the clinical evidence obtained from the analysis of RWD. RWE can provide valuable information that a controlled setting of a clinical trial may not be able to provide.  

Social media posts from patients include information about disease, symptoms and its progression. These patient or caregiver generated data often narrate their daily life difficulties or solutions. Research community has debated about using social media narratives as RWD. But a more important question is - is it possible to advance our current understanding of various diseases using these social media narratives?    

Social media and Virtual communities

A common misconception is that social media refers to networking sites such as Facebook or LinkedIn. However, social media encompasses several avenues such as wikis, microblogs, photo or video sharing tools, and discussion forums. Instagram or WhatsApp are mobile based interactive platforms, whereas multi-user virtual environments are often found in online gaming. This list of social media continues to grow. 

Patients, caregivers, and even healthcare professionals share information or interact with each other using social media to form virtual communities. Virtual communities can be helpful in overcoming logistical challenges such as location or space to establish communication channels. Researchers can listen to these channels to advance our current understanding of a disease. But since the information shared on social media is voluntary, it may not be complete or it may not address all aspects of a research query. In addition to social listening, health care professionals may need to gently direct conversations to seek responses to their specific research query e.g. how did stay at home order affect patient journey for a particular disease?  

Real world data and patient perspectives

Broadly speaking, patients and caregivers use social media for learning from other patient’s experiences. Research has revealed that patients use social media for emotional support and to seek information about the disease. Some use social media to boost self-esteem, or to gain network support of people in similar situation. Social media posts are used to make a ‘social comparison’ or how bad their disease progression is. Patients or caregivers may also use social media for emotional expression such as release of negative emotions or vent about the illness. Patients have reported a variety of outcomes of using social media. For instance, while some reported enhanced feelings of well-being, improved self-management, others have reported diminished subjective well-being or increased anxiety.  

Social media narratives can be extracted, analyzed, and interpreted like any other form of RWD. Social media narratives give us an insight into patient perspectives and lifestyle. In traditional methods of data collection, the data is collected in a healthcare professional’s office using questionnaires or interviews. (Or during the pandemic, telemedicine gained popularity and questionnaires were administered via the internet). However, these instruments often do not capture all aspects of the real world issues in caregiving or living with the disease. Social media narratives can help us bridge that gap. It allows a clinician to see a patient’s point-of-view in that moment of difficulty and offer care accordingly.     

But is it ethical to treat social media narratives as RWD or is it considered as eavesdropping on social conversations? 

Ethics in healthcare and use of social media

From social media narratives, researchers can study patient experiences and behaviors to better design patient-centered care. But there are ethical considerations that research groups need to follow while using social media for scientific query. The US Food and Drug Administration (FDA) has provided guidelines for data collection on social media. For instance, posts on public forums imply that the person posting is aware that their views are ‘out there’ in the public domain. Additional consent may not be necessary. But on password-protected sites, the user may not intend a public posting and want to maintain some privacy. When it is possible to identify a user, the risk of identification or vulnerability may require obtaining consent. Furthermore, obtaining consent from minors or individuals with cognitive impairment may not be feasible. 

Following research ethics guidelines to protect patient privacy is a core value at Real Life Sciences. Our team of researchers uses social media data and analyzes it using our platform to form meaningful insights. During this process, we ensure that patient privacy is maintained. 


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