The role of Participatory Action Research in developing new models of healthcare: Perspectives from participants and recommendations for ethical review and governance oversight

Abstract

Participatory Action Research (PAR) is a methodology often used in social sciences, which involves groups of people in action, reflection and iterative change. In PAR, ‘traditional’ researchers become participants, and people who comprise ‘traditional’ participants become researchers, facilitating cohesiveness and communication within the team. However, PAR is less used in healthcare, despite the complexity of providing and receiving health and social care. Development and testing of the delivery of new models of care is an area with increasing service-user participation, but often with no structured or formalised framework to embed end-users. This may be due in part to the complex ethical and governance systems in healthcare research, and the lack of practical guidance on using PAR as a research method within this context. We carried out a PAR project to develop and evaluate the implementation of a new model of care for the assessment and management of respiratory conditions in the community (MISSION ABC). The care model delivered a community-based multidisciplinary clinic involving healthcare staff from both primary and secondary care. Regular sessions were held for participants (including patients, healthcare staff, research staff) to discuss observations, reflections and suggestions for the development and delivery of the care model. At the end of the project, meetings were held with representatives from the different groups of participants to discuss overall views about the study and ethics and research governance challenges specifically. We present key perspectives from various stakeholders involved in the PAR process, highlighting benefits and challenges. Specific challenges relating to ethical and governance approvals encountered in the set-up and delivery of the project are described. These include the design of the study protocol, approaches to consent, presentation of study information within the current ethical and regulatory frameworks and maintaining the flexibility of study methods and roles of participants throughout the study period. Recommendations for improvement in the research pathway that PAR researchers could adopt to enable a meaningful and successful PAR approach are made, in addition to suggestions for overarching ethics and governance frameworks. Developing new models of healthcare benefits significantly from collaboration with stakeholders so that the design and delivery are feasible and acceptable to all. However, the current UK research approvals and governance frameworks present challenges to design and successfully deliver PAR studies in healthcare; we present possible solutions.