Dissertation (Doctoral) Engaging Patients in Health and Health Care Processes: The Role of Patient Platforms


Claudia S.W. Lai


Background: Health-specific social media platforms, referred to as patient platforms (PPs), are now freely available on the Internet to engage users in their health care process; yet, little is known about what they are trying to achieve, for whom they are designed, and how they attempt to achieve their goals. Methods: Qualitative methods were used to analyze textual and visual data (e.g., platform policies and other relevant webpages) collected from a purposive sample of eleven PPs stratified by various attributes (for-profit/not-for-profit, single/multiple conditions, different conditions). Data were systematically tracked and rigorously analyzed according to Framework Analysis methodology. Results: The study identified a framework for mapping tools. It also revealed that PPs connected users in what was referred to as communities, to share information on specific medical conditions. Forums were the main tools connecting users. Some PPs offered simple forums for posting questions and answers whereas others offered forums for ongoing discussions. Besides supporting patients, PPs were also noted as a channel for delivering advertisements and marketing material directly to patients. Lastly, platform tools have the potential to engage and empower patients to take on an expanded role but can also be oriented towards supporting the platforms’ own interests, and the interests of their sponsors. Discussion: The emergent framework described in this study can be used to support the design of future tools for better engaging patients. Second, users may not be aware of other platform interests without reading or understanding policies to which users are required to consent. Finally, advertisements provided through PPs can affect the health of patients and the health care system in various ways, both positive and negative. More research is needed in this evolving area to better understand the impacts on the health of patients and the health care system.


Aviv Shachak