Exploring the Utility of Patient Stories on Social Media for Healthcare Quality Improvement

This thesis explores the phenomenon of patient stories on social media. This phenomenon represents the intersection of two phenomena: patient experience and social media. Healthcare experience refers to the interactions of a patient with the healthcare system members, including the nurses, physicians, and staff, and the resultant emotional and behavioural effects of these interactions on patients, including patient satisfaction, patient commitment to health, and patient adherence to treatment plans. Social media refers to the internet-based applications that enable people to communicate, interact, publish, and exchange all types and formats of information, including text, pictures, audio, and video. Patient stories on social media refer to patients' posts that describe their healthcare experiences. This thesis aims to assess the utility of patient stories on social media for healthcare quality improvement and explore the health system and policy factors that can positively or negatively affect this utility in the healthcare system in Ontario. The thesis is comprised of an introduction chapter, a theoretical perspective chapter, four studies presented in chapters 3 to 6, and a conclusion chapter. Additional material is provided in several appendixes, including a definitions section in Appendix 1.A. The first study seeks to understand the perspectives of healthcare providers and administrators in Ontario regarding the factors affecting the patient experience. Qualitative data were collected between April 2018 and May 2019 by interviewing 21 healthcare providers and administrators in Ontario. Interviewees included physicians, nurses, optometrists, dietitians, quality managers, and policymakers. The study findings show that there are two perspectives on patient experience: the biomedical perspective, which prioritizes health outcomes and gives high weights to healthcare experience factors that can be controlled by healthcare providers, while ignoring other factors, and the sociopolitical perspective, which recognizes the impacts of healthcare politics and the social context of health on patient experience in Ontario. The second study explores the perspectives of healthcare providers and administrators on patient stories on social media and whether they can be used for evaluating healthcare experiences. Data were collected between April 2018 and May 2019 by interviewing the 21 healthcare providers, and administrators in Ontario noted in study one. Study findings show that several barriers prevent healthcare providers from realizing the benefits of social media, including the professional healthcare standards and codes of conduct, the time and effort required to process these stories, and the significant number of stories on social media, which also increase the time needed to process these stories. The third study analyzes the social media policies of the healthcare regulatory authorities, which are the regulating and licensing bodies in Ontario, and explores how these policies encourage or discourage the use of social media by healthcare providers. The study uses document analysis and qualitative content analysis to analyze social media policies and guidelines of some healthcare colleges in Ontario issued between 2013 and 2019. The study findings show that in the healthcare system in Ontario, social media is perceived as a source of risks to the healthcare professions and professionals, and therefore, policies are developed to mitigate those risks. Healthcare regulators emphasize that the codes of conduct and the professional standards of healthcare extend to social media, despite the distinct context of social media. The study found no systematic recognition of patient stories on social media as a source of information that requires the attention of healthcare professionals. The fourth study analyzes patient stories on the Care Opinion platform, which is an online platform that enables patients to post stories about their healthcare experiences and enables the providers to respond to these stories. The study explores the elements of healthcare experience in these stories, the characteristics of the stories that receive responses from healthcare providers, and the association between the satisfaction level of the patient expressed in these stories and the likelihood of receiving a provider response. The study collected 367,573 patient stories from the Care Opinion platform that were posted between September 2005 to September 2019. The study uses topic modelling (Latent Dirichlet Allocation), sentiment analysis, and logistic regression to analyze the data. Data analysis identified 16 topics in these stories. These topics can be grouped into five categories: communication, quality of clinical services, quality of services, human aspects of healthcare experiences, and patient satisfaction. Stories that describe healthcare experience of a family member, or reflect patient thankfulness, gratitude, or satisfaction with communication are associated with a high likelihood of receiving a provider’s response; however; the sentiment score of a story, which I used as a proxy for patient satisfaction, was insignificant. The thesis concludes by identifying several barriers that impede the use of patient stories on social media for quality improvement. These barriers are the beliefs and priorities of healthcare providers, the social media policies of the healthcare regulatory authorities and professional healthcare standards and codes of conduct that restrict patient-provider communication, the time and effort required to process patient stories, and the credibility of patient stories