Projects to improve PPIE
 |
Kelly Birtwell - University of Manchester Project Title: Increasing access to healthcare research for under-served groups: Evaluation of the Autism@Manchester research involvement toolkit Brief Summary: TBC Start / end dates: 1.8.25 - 31.3.26 Contact email: kelly.birtwell@postgrad.manchester.ac.uk |
 |
Hollie Gay - University of Exeter Project Title: Supporting the engagement and representation of care-experienced children in research and evaluation through co-produced resources Brief Summary: TBC Start / end dates: 1.4.25 - 31.12.25 Contact email: h.c.gay@exeter.ac.uk |
 |
David Hunt - University of Exeter Project Title: Beyond the stigma: New approaches to involving young men in mental health research Brief Summary: TBC Start / end dates: 1.7.25 - 31.3.26 Contact email: d.hunt3@exeter.ac.uk |
 |
Tessa Morgan - Cambridge University Project Title: How to best support expert-by-experience researcher emotional safety whilst co-producing research with underserved populations on sensitive topics? Brief Summary: There are now strong imperatives that any research with underserved communities ought to involve experts-by-experience (EbyE). However, recommendations on how best to manage the emotional challenges of co-producing such research remain sparse EbyE co-researchers involved in mental health research have themselves identified a need for greater clarity around how to best embed emotional support into co-production. The aim of this project is to systematically develop guidelines addressing the best way to support EbyE researchers’ emotional safety whilst co-producing research with underserved communities on sensitive topics. Working with a team of EbyE from the NIHR-funded COACHES study, we will co-produce a systematic review of existing evidence around co-production and emotional safety. With the support of the National Children’s Bureau and Carer Leavers Association we will consult widely about findings from the systematic review with EbyE researchers, practitioners and academics working with underserved communities in order to produce best practice guidelines. Start / end dates: 1.3.25 - 28.2.26 Contact email: tlm32@medschl.cam.ac.uk |
 |
Dan Steward - Newcastle University Project Title: "RADICAL: Better Research ADvocacy and Involvement for Communities with Severe MentAL ill-health " Brief Summary: Public and patient involvement and engagement (PPIE) is a very important part of research. Funders expect its inclusion throughout the progress of awards with an emphasis on meaningful collaboration with public contributors. However, evaluation of PPIE activities is often not well reported, limiting the sharing of best practice or identifying areas of improvement, meaning there is small opportunity to strengthen and enhance practices. Within the WHOLE-SMI project, we conducted a light-touch evaluation of our PPIE activities as part of our end of project reporting requirements. We asked for qualitative feedback from our Community Advisory Group members (CAG) and found that the majority of members felt like valued and equal collaborators, and it also created a safe-space of peer-support. They also highly valued the advocacy of researchers in advocating for holistic improvements to mental and physical health service enhancements for people living with SMIH. Their contributions helped frame our research and interview questions, our participant recruitment, considerations and adaptations to our choice of language and terminology, the way we interpreted and described our findings and identifying the key messages of our findings that are most important to the community. Whilst we retained the majority of our community members, we did lose two members along the project lifecycle. Additionally, (and in line with observations within our project data), we recognise gaps in representation from diverse populations within our community. Using qualitative research methods (such as semi-structured interviews or workshops), we are upskilling our CAG to be able to participate in interviewing each other to carry out an in-depth evaluation of PPIE activities in regional mental health research (including WHOLE-SMI). We will consider how we can better capture and promote best practice of public engagement, learn from areas identified where things could be improved, consider how we can improve engagement participation from other groups of people in our community, and how we can promote and support long-term sustainable advocacy groups from our public contributor members beyond research project lifecycles. Start / end dates: 1.4.25 - 31.12.25 Contact email: Dan.steward@newcastle.ac.uk |
 |
Tammi Walker - Durham University Project Title: Improving Patient and Public Involvement and Engagement with Imprisoned Women with Severe Mental Illness Brief Summary: People with severe mental illness (SMI) have a life expectancy that is reduced by up to 20 years shorter than the general population. People in contact with the criminal justice system (CJS) have multiple complex health and social care needs including higher rates of physical and mental health needs. Approximately 5,000 women are imprisoned in the UK, 71% of whom have mental health care needs. Imprisoned women often have disproportionately higher levels of serious SMI compared with men in prison, which deteriorated during COVID-19. These are compounded by complex needs arising from Adverse Childhood Experiences (ACEs), trauma, abuse, separation from their children and family, homelessness, and unemployment. Over the last decade reports and strategies have advocated prison as a last resort for women. Racially minoritised women are more likely to be remanded or sentenced to custody, feel less safe in custody, have less access to mental health services. Minimal evidence exists about how women in contact with CJS with SMI use primary care services, to what extent services are meeting their healthcare needs and how these experiences are racially differentiated. Methodologically, the value of lived experience contribution and co-production methods is becoming increasingly recognised. Furthermore, the use of participatory approaches with criminal justice experienced people, particularly women, is minimal. Our proposed research will start to address these gaps in knowledge, with significant methodological, PPIE and health findings. We aim to understand of the views of women with SMI who are in contact with the CJS about the facilitators and barriers to their involvement across the research cycle. We will then develop and evaluate new ways of engaging and working in partnership to improve research undertaken in primary care services. Start / end dates: 1.4.25 - 31.3.26 Contact email: Tammi.walker@durham.ac.uk |