What is it?
Social media are internet-based websites and applications that allow the creation of networks and communities for sharing user-generated content. User-friendly platforms are provided for patients to share health information via the internet. Patients typically use social media to find information on their health conditions, share their experiences and find social support. Assessing the content viewed, generated and shared by patients on social media can provide a vast amount of data for research, including data to complement relative effectiveness assessments. Social media may be considered a source of ‘big data’.
Facebook, Twitter, forums, online message boards and online patient platforms, for example PatientsLikeMe, are all examples of social media. PatientsLikeMe also an example of a patient powered research Network (see Patient-Powered Research Networks).
Why is it useful?
- Estimating relative effectiveness: information on patient perspectives and experiences obtained from social media may contribute to estimating relative effectiveness by providing health data on adverse effects of treatment, reasons for changing treatments and non-adherence to treatment and quality of life.
- Efficient collection of patient perspectives: data on patients’ views can be collected and assessed in a short time frame.
- Large geographic areas are covered, and rare diseases can be targeted: health data can be collected across wide geographic areas. Information from patients with rare diseases, which may be difficult to obtain through conventional studies, can be targeted and collated across large geographic areas.
- Identifying adverse events: data on rare, new and/or unlabelled adverse events may be collected.
- Convenient for patients: patients can access social media at a time and place that is convenient to them.
What are its limitations?
- Methodology lacking: there is a lack of methodological guidance on collecting and using data from social media.
- Does not replace existing research: viewed as complimentary to traditional research and pharmacovigilance.
- Authenticity cannot be verified: authenticity of patients cannot be verified, for example whether a person indeed has the condition that he/she is discussing.
- Unrepresentative sample: patients using social media may not represent all patients. For example, they may have a different age range or level of education than patients who do not use social media.
- Suboptimal quality of information: quality of information may be suboptimal. For example, a single user may post multiple times on the same topic.
- Difficulty retrieving information: search terms may not retrieve all relevant information. For example, posts may include misspellings, non-medical terms and slang.
- Barriers in analysing data across languages: language differences may cause challenges, for example for data across European countries.
- Inaccessible channels: inaccessibility of some social media channels, for example closed Facebook groups.
What do stakeholders say?
The role of social media is growing, for example, some pharmaceutical companies use social media to gain insight into patient perspectives on adverse events and to assess their reasons for changing treatments. The US Food and Drug Administration (FDA) is collaborating with PatientsLikeMe (an online patient platform) to access information on patient perspectives on adverse events.
The Association of the British Pharmaceutical Industry (ABPI) has published guidance (Guidance Notes on the Management of Adverse Events and Product Complaints from Digital Media, 2013) on managing adverse events and product complaints from digital media.
Advantages of social media for patients are in three main areas:
- Information: patients can easily look for information related to their condition or share information with others (patients, clinicians or researchers).
- Communication: communication between patients and clinicians is supported (for example, helping patients manage appointments and visits) and connections with other patients can be made.
- Empowerment: patients can be actively and effectively involved in their own care and in clinical research by sharing their views and experiences.
Rachel Kalf, Zorginstituut Nederlands (ZIN)