Developing a Framework to Generate Evidence of Health Outcomes From Social Media Use in Chronic Disease Management

BACKGROUND: While there is an abundance of evidence-based practice (EBP) recommendations guiding management of various chronic diseases, evidence suggesting best practice for using social media to improve health outcomes is inadequate. The variety of social media platforms, multiple potential uses, inconsistent definitions, and paucity of rigorous studies, make it difficult to measure health outcomes reliably in chronic disease management. Most published investigations report on an earlier generation of online tools, which are not as user-centered, participatory, engaging, or collaborative, and thus may work differently for health self-management. OBJECTIVE: The challenge to establish a sound evidence base for social media use in chronic disease starts with the need to define criteria and methods to generate and evaluate evidence. The authors’ key objective is to develop a framework for research and practice that addresses this challenge. METHODS: This paper forms part of a larger research project that presents a conceptual framework of how evidence of health outcomes can be generated from social media use, allowing social media to be utilized in chronic disease management more effectively. Using mixed methods incorporating a qualitative literature review, a survey and a pilot intervention, the research closely examines the therapeutic affordances of social media, people with chronic pain (PWCP) as a subset of chronic disease management, valid outcome measurement of patient-reported (health) outcomes (PRO), the individual needs of people living with chronic disease, and finally translation of the combined results to improve evidence-based decision making about social media use in this context. RESULTS: Extensive review highlights various affordances of social media that may prove valuable to understanding social media’s effect on individual health outcomes. However, without standardized PRO instruments, we are unable to definitively investigate these effects. The proposed framework that we offer outlines how therapeutic affordances of social media coupled with valid and reliable PRO measurement may be used to generate evidence of improvements in health outcomes, as well as guide evidence-based decision making in the future about social media use as part of chronic disease self-management. CONCLUSIONS: The results will (1) inform a framework for conducting research into health outcomes from social media use in chronic disease, as well as support translating the findings into evidence of improved health outcomes, and (2) inform a set of recommendations for evidence-based decision making about social media use as part of chronic disease self-management. These outcomes will fill a gap in the knowledge and resources available to individuals managing a chronic disease, their clinicians and other researchers in chronic disease and the field of medicine 2.0.