A study on lived experience researchers’ involvement in sensitive health research

Aims

Lived Experience Researchers (also known as peer researchers, co-researchers, lay researchers, survivor researchers etc.) contribute to health research by combining their personal Experience of health conditions and research skills. We aim to understand how they have entered research and their experiences working within university health study teams.

We will use this learning to develop a new ‘Lived Experience Researchers’ section on www.hexi.ox.ac.uk. Health Experience Insights (HEXI) is a website presenting interviews from health research studies. This new section will complement other sections focusing on people’s experiences of research, which can be used as guidance and training for Lived Experience Researchers and anyone who works with them.

Why this is important

Lived Experience Researchers (e.g. peer researchers, co-researchers, lay researchers etc.) are researchers with personal experience (e.g. patients, service users, carers) of a research topic. 

While Lived Experience Researchers can bring unique perspectives to enhance the relevance, inclusivity and impact of health studies focused on sensitive topics, their involvement in research varies and there is limited guidance for academic researchers seeking to work with them. Moreover, less is known about the factors that shape their involvement across health studies, how they navigate the duality of the role, and the ways academic teams ready themselves to integrate Lived Experience Researchers. Hearing and sharing their stories will highlight how Lived Experience Researchers need to be supported and can be integrated within university study teams. These shared experiences will inform research approaches and guidance for those wanting to involve lived experience within health research.

What are we doing?

Bakita Kasadha is interviewing people who have worked as or with Lived Experience Researchers involved in sensitive health researcher, specifically Hepatitis, HIV, mental health and/or perinatal health research studies. These areas have been chosen because of the overlap between long-term health conditions, vertical transmission, diagnoses during pregnancy and health equity.

More information

This is a PhD project, led by Bakita Kasadha (NIHR Doctoral Research Fellow), informed by an advisory panel and supervised by:

Professor Sue Ziebland,
Professor Cicely Marston
Dr Teresa Finlay.

Contact Bakita for more information: bakita.kasadha@phc.ox.ac.uk or 07385466115

Funding information: https://fundingawards.nihr.ac.uk/award/NIHR303689

Health Experience Insights (HEXI) is a website presenting interviews from health research studies.