Benefits and harms of patient stories on social media from the perspective of healthcare providers and administrators in Ontario

Abstract

There has been a growing use of social media by patients to share their healthcare experiences and produce information that can be helpful to other patients seeking healthcare services. These stories can reveal issues in healthcare quality. However, faced with the inherent risks of social media, healthcare providers have been skeptical about the value of these stories, and many healthcare systems have adopted restrictive and protective policies to control the use of social media by healthcare providers. This study explores healthcare providers' and administrators' perspectives on patient stories on social media and whether they can use the stories to evaluate healthcare experiences. Semi-structured interviews (n = 21) were conducted with healthcare providers and administrators, including physicians, nurses, and quality managers in Ontario, Canada, between April 2018 and May 2019. Inductive and data-driven thematic analysis was used to analyze the data. Several barriers prevent healthcare providers from realizing the benefits of social media, including concerns about the quality of patients' feedback, the professional codes of conduct, and the time and effort required to process these stories. The study findings suggest that cultural changes in the healthcare system might be required to foster the use of social media for healthcare quality improvement and enable the development of a safe patient-provider communication environment that facilitates the exchange of constructive feedback between the two parties without the

The Experiences of Stakeholders Using Social Media as a Tool for Health Service Design and Quality Improvement: A Scoping Review

“…Improves clinical practice. The relationship-building capacity of social media was also seen to improve clinical practice [ 39 , 69 , 72 , 81 , 91 , 97 ]. This occurred through service providers gathering insights into the lived experience of healthcare consumers and improving practice or creating new interventions due to these insights [ 39 , 91 , 97 ], and by facilitating peer learning between providers [ 69 , 72 , 81 ].…”

“…The most frequently reported risk or limitation theme was that social media is underutilised by target audiences of the health service or QI/design activity [ 42 , 45 , 47 , 51 , 52 , 56 , 59 , 60 , 63 , 64 , 65 , 66 , 70 , 74 , 75 , 76 , 78 , 79 , 83 , 84 , 86 , 89 , 90 , 96 , 97 ]. There was a belief the people who used social media were not representative of the stakeholders who would be affected by the change in service design or health policy [ 42 , 47 , 51 , 52 , 56 , 59 , 60 , 63 , 64 , 66 , 70 , 75 , 76 , 83 , 84 , 86 , 90 , 97 ] and that few people in general used social media [ 51 , 52 , 65 , 74 ]. Particular target groups reported to be less likely to use social media were people over 40 years old [ 79 , 96 ,…”

“…There was a belief the people who used social media were not representative of the stakeholders who would be affected by the change in service design or health policy [ 42 , 47 , 51 , 52 , 56 , 59 , 60 , 63 , 64 , 66 , 70 , 75 , 76 , 83 , 84 , 86 , 90 , 97 ] and that few people in general used social media [ 51 , 52 , 65 , 74 ]. Particular target groups reported to be less likely to use social media were people over 40 years old [ 79 , 96 , 97 ], people with poor health literacy [ 96 ], people of non-Caucasian/Anglo-Saxon ethnicity and culture [ 89 , 97 ] and service providers [ 74 ]. Underutilisation was also seen in the ways that people engaged in social media tools.…”

“…Quality of discussion or information gathered not sufficient for QI purposes. The quality of discussion or information on social media could limit its effectiveness for informing QI activities [ 39 , 42 , 56 , 57 , 63 , 65 , 75 , 76 , 80 , 97 ]. Information gathered may not be relevant for QI purposes because it might not answer the right question, responses may be too emotionally driven, or people may self-censor because of the public nature of the platform [ 42 , 65 , 76 , 97 ].…”

“…The quality of discussion or information on social media could limit its effectiveness for informing QI activities [ 39 , 42 , 56 , 57 , 63 , 65 , 75 , 76 , 80 , 97 ]. Information gathered may not be relevant for QI purposes because it might not answer the right question, responses may be too emotionally driven, or people may self-censor because of the public nature of the platform [ 42 , 65 , 76 , 97 ]. True co-creation of service design solutions between different stakeholder groups was seen as hard to achieve [ 39 , 57 ], and social media was seen as a place where people with similar views just come and reinforce their ideas and opinions rather than sharing ideas and learning from each other [ 56 , 60 , 63 , 75 , 80 ].…”