A systematic scoping review exploring how people with lived experience have been involved in prison and forensic mental health research.

BACKGROUND: Introduction of guidance by the National Institute for Health Research has led to an increase in participation by people with 'lived experience' of mental health problems. However, some researchers have questioned the extent to which involvement has been meaningful, expressing concerns that involvement is impeded by the structure and culture of academia. A prior review of literature to 2016 provided little evidence of active engagement. AIMS: To find out from published literature how patient and public involvement in designing and or conducting research has been used in forensic mental health settings, prisons or probation since the last review period. METHODS: A systematic scoping review of research published in academic journals between 2016 and February 2023 was completed using terms for research activity, involvement of people with experience of receiving services and health or justice systems to search three databases: MEDLINE, EMBASE and PsycINFO. We used the Guidance for Reporting Patient and Public Involvement in Research Tool to support data extraction and to summarise our own service user involvement in this study. RESULTS: From 675 unique titles retrieved, 17 were eligible for inclusion, covering 16 unique studies. Most of the included research was by/with people who had prison experience. Only two studies had been conducted by/with people who had experience of secure hospital wards/forensic mental health services. Details of how people with lived experience had contributed to the research were scarce, but in 8 studies they had been involved throughout and included in the authorship group. CONCLUSION: Whilst this review identifies pockets of good practice, meaningful engagement in forensic mental health research seems to remain rare, at least as reported in papers published in academic journals. Further research is required into whether this reflects real limits on inclusion, as we suspect, or such full integration that such reporting is not regarded as necessary or desirable, which we doubt. We urge journal editors to routinely ask authors to include information about how people with lived experience have been involved in any published research and the nature and extent of the influence they had. This may help to develop the evidence base and guard against tokenistic involvement.

A Co-creation Centre for Accessible Rehabilitation Technology.

Background: The prevalence of disabling conditions is increasing globally. Rehabilitation improves function and quality of life across many conditions, particularly when applied intensively. The limited workforce, however, cannot deliver evidence-based intensive rehabilitation. By providing individuals with the tools for self- rehabilitation, technology helps bridge the gap between evidence and practise. Few people, however, can access rehabilitation technology. Barriers such as cost, training, education, portability and poor design stand in the way of equitable access. Our group of engineers and researchers have established a centre dedicated to developing accessible technology through close, frequent engagement with users and industry. Methods: The centre employs a co-creation model, coupling engineering and science with user experience and industrial partnerships to develop accessible technology and associated processes. Due to the complexity and size of the challenge the initial focus is stroke. Recruited through a medical charity, participants, with a wide range of disabilities, use prototype and commercial technology during an 8-week rehabilitation programme with supervision from health professionals. The centre includes de-weighting systems, neurostimulation, virtual reality, treadmills, bespoke rehab games, communication apps, powered exercise equipment and gamified resistance equipment. Standard outcome measures (International Classification of Functioning, Disability and Health) are recorded before, during, immediately after, and 3 months after the intervention and used in combination with an interview to design the initial rehabilitation programme, which is reviewed fortnightly. Qualitative methods (surveys and interviews) are used to capture personal experiences of the programme and individual technology and an advisory group of stroke survivors help interpret outcomes to feed into the technology design process. Ethical approval has been granted for a pilot cohort study with stroke survivors, which is currently underway (01/09/2021-31/12/2021) investigating acceptability and feasibility, due to report findings in 2022. Discussion: Through partnerships, research collaborations and a co-creation model a new centre dedicated to the development of accessible rehabilitation technology has been launched and currently undergoing acceptability and feasibility testing with stroke survivors. The centre, through its close engagement with users and industry, has the potential to transform the way rehabilitation technology is developed and help revolutionise the way rehabilitation is delivered.