OBJECTIVES: Social media (SM) is rapidly becoming a useful component in a patient-centered outcomes researcher’s toolbox; whether as method of recruiting patients or as a source of patient reported information (PRI) that exists outside the formal research context. The aim of this targeted review was to explore the use of SM research methods as presented to the ISPOR community; specifically, where SM research methods have been employed and the perceived value (advantages and challenges) of SM to patient-centered research.
METHODS: A review of the ISPOR conference abstract database (2010 – 2018) was conducted using key search terms. The identified abstracts were manually reviewed and categorized according to how SM platforms and/or SM data were implemented in the studies (i.e., recruitment, PRI data, health communications, pharmacovigilance). A review of benefits and limitations reported by study authors was also conducted.
RESULTS: 64 ISPOR abstracts were identified from that referenced SM; 43 presented at EU-ISPOR, 21 at US-ISPOR and 1 at Latin-American-ISPOR. 25 studies used SM as a method of patient recruitment, 25 studies used SM data to explore patient insight into disease experience, 7 studies related to pharmacovigilance, the remaining 7 studies included reviews (n=4), ethical and feasibility considerations of SM (n=2) and health communication (n=1). Studies emphasized the value of SM for patient recruitment as an adjunct to traditional recruitment methods or to support access to hard-to-reach patient groups. SM was also identified as useful tool to provide insights into different patient disease experience including asthma, breast cancer and multiple sclerosis, which can inform on the development of conceptual models or compliment preliminary stages of a study.
CONCLUSIONS: This review illustrates the rise in interest and utilization of SM within patient-centered research and reinforces that SM is a valuable portal through which patients and their stories can be accessed.
