Turning the tables: creating space for lived experience leadership in research

This commentary shares reflections and learning about the factors that supported the meaningful involvement of a service user being funded to undertake a service evaluation in a health and social care trust in Northern Ireland and the personal, professional and organisational benefits. It discusses the role of power and how this evolved with the service user now a researcher amongst those who previously provided care. It also explores the importance of the wider health and social care research agenda, with the discussion situated in Bronfenbrenner’s ecological systems theory which asserts that different systems, no matter how remote, influence individuals and each-other. It is co-produced and written from the perspectives of the service user and those involved at organisational and strategic level. This experience is compared to previous patient and public involvement experiences and barriers and facilitators to involving service users in research are explored. The importance of building good relationships and shared values like openness, courage and humility were key factors common to everybody’s experience. The authors describe specific elements like practical considerations, respect and good communication that built trust, aligned with core social work values, and the need for a trauma-informed approach. The importance of strategic vision and leadership which laid the foundation for the inclusion of service users in social work and social care research in Northern Ireland, is discussed. The ties with improving the quality-of-service provision and staff and service user well-being is covered. The article highlights that opportunities to develop research skills are essential in building capacity and have wide reaching benefits on a personal and professional level with supports, like mentoring, key to enabling good outcomes. The authors recognise the unique advantages specific to their experiences and invite the reader to consider their reflections within that context. They conclude that multiple systems must collaborate to ensure positive, equitable access for service users undertaking research within organisations. They assert that relationships built on trust with shared values are cornerstones for such endeavours and encourage organisations and educational institutions to show leadership in prioritising and facilitating leadership of service users in research. This article outlines the learning we all gained from a service user carrying out an evaluation in a health and social care trust in Northern Ireland. It explains why at top levels and throughout health and social care organisations and in education and at government level, people need to work together. The article covers the views of the service user and the people within the organisations who supported her. They discuss issues that can make it difficult for service users to be involved in research as well as different aspects that made this experience positive for everybody involved. The quality of the relationships which developed was key to what worked well alongside every person placing the same importance on values like respect, trust, being open to learning and seeing everybody as equals. They discuss how opportunities to develop research skills, for both social work practitioners and service users, are needed to maintain good services. The authors write from the perspective that everything is connected and people leading different services must work together to support service users’ involvement in research, including putting in place practical supports, like meeting rooms and getting permission to do the service evaluation. They also discuss the advantages they had during the process which would be different for different people. The article highlights the benefits of service user researchers when proper structures and supports are in place.