Building or Breaking Trust in Healthcare Through Patient and Family Engagement in Research and Service Design: The Need for Authentic Engagement Practices

Trust in the healthcare system is an important driver of public health, but is sometimes lacking among individuals and communities. Patient and family engagement in research and service development is one proposed means of influencing trust. Patients and families can be engaged authentically and meaningfully as partners in the conduct of research and the development of healthcare services. When engagement is conducted following best practices, patients and families have the opportunity to build strong mutual relationships with project leads, hold a share of the power in the discipline, and exercise choice to influence the research and service development agenda. These mechanisms might increase trust in researchers and clinicians, potentially extending to institutions and entire systems of care. However, if conducted poorly, patient and family engagement may erode trust, creating frustration, skepticism, and retraumatization. When engagement goes wrong, the utmost care must be taken to building shared solutions to challenges, with the goal of rebuilding trust that has been lost. Importantly, no amount of high-quality engagement can be expected to erase the substantial historical and current harms that have been done to patients and communities within the healthcare system. In order for patient and family engagement to increase trust in the healthcare system, it is incumbent on project leads to be worthy of the trust they seek, while always maintaining the context of a historical backdrop that was not.