Social Media: A rich resource for understanding patients’ disease and treatment frame and building (on) patient-centricity models

Abstract

Research and initiatives within healthcare are increasingly focused on integrating the voice of patients with the recognition that understanding patients’ experiences and values are essential to providing meaningful treatment and treatment programs. In this paper, I address the nature of existing research relative to the concepts of Patient Centered Care and Patient Reported Outcomes as well as the degree to which that research integrates patients’ voices as heard through social media. The article argues that while there is increasing recognition of the internet as a location through which to reach patients - such as for delivery of information and healthcare management tools - there are great opportunities for conducting significantly more and much deeper analyses of patients’ (and healthy people’s) vantage point via the discussions they have online with peers in social media. Social media locations range from open communities within Facebook and Reddit to much smaller open-access .org and .com communities. Analyses can provide insight into a range of questions from patients’ cognitive orientation and ways of making sense of or working with their disease to the physician-patient relationship as signaled by patients’ positioning of the physician.