Meaningful and effective patient engagement: What matters most to stakeholders

Abstract

To determine what resources, preparation, and support are needed for patients, providers, and leaders to meaningfully and appropriately engage in patient-centred health system redesign, researchers sought to learn what really matters to these three stakeholder groups. A qualitative descriptive design was selected using purposive participant sampling, focusing on ‘who’, ‘what’ and ‘why’ questions pertaining to stakeholder perceptions about patient engagement in their specific context as patients, providers or leaders. Four project groups were selected; each group was responsible for a strategic initiative within Alberta Health Services and represented one of three different levels of the healthcare system (i.e. program, site or governance). Semi-structured question guides were used to collect data. Thematic analysis of the transcribed participant responses revealed eleven major themes: understanding patient engagement; language, communication, information; level and timing of engagement; recruitment and retention; roles, responsibilities and expectations; reason for being; expense; time commitment; governance and structure; knowing who’s who; and evaluation. Patients, providers and leaders agreed to the importance of communication around the reasons for patient engagement including building trust through collaboration and clearly identifying goals, along with their roles and responsibilities. These stakeholder perspectives are needed to inform the development of tools, resources and education materials required to support patient engagement activities tailored to the needs, understandings and perspectives of stakeholders.