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Study highlights the importance of 'lived experience' provided by prisoners to shape cancer care research in prisons

Researchers leading an NIHR-funded study investigating cancer diagnosis and care in English prisons have highlighted the importance of former prisoners’ providing their ‘lived experience’ in shaping their work.

The study, which is the first of its kind, is led by researchers from King’s College London and the University of Surrey, who are assessing the diagnosis levels, access to treatment, support and experiences of those with cancer in prisons.

Now a paper, published in the journal Research Involvement and Engagement highlights the importance and value of ‘lived experience’ that only prisoners can provide to shape meaningful research and policy decisions.

The study is unique in its combination of interviews with current and former prisoners, custodial professionals, and healthcare providers to identify and understand barriers in delivering high-quality healthcare and support to those in custody. In addition, researchers gathered data on the number, types and stages of cancers diagnosed in patients within prisons.

Former prisoners have been involved in research design and have worked as 'lived experience researchers', conducting interviews with patients and professionals.

Full results of the study, which is funded by NIHR’s Health Services and Delivery Research (HS&DR) Programme, are due to be published later this year.

In future the researchers believe that findings from this study will help inform prison cancer care policy and develop priorities for improving it within the prison system.

Dr Jo Armes, Reader in Cancer Care and Lead for Digital Health at the University of Surrey, who led the interviews with patients and professionals, said: "People in prison have a right to receive the equivalent standard of care as they would in the community. It is very unclear whether this is the case due to the current systems of reporting.

"Not only is the prison population increasing, but the demographic is getting older, with implications for heightened risk of developing cancer. Appropriate strategies must be in place so those in custody can be diagnosed early and access care promptly, which will also ensure effective and efficient use of NHS resources."

Professor Jo Rycroft-Malone, Director of the NIHR's HS&DR Programme, said: "This is an important area of research, and the first of its kind to investigate cancer care within English prisons, including the types and stages of the disease and the treatments available for prisoners.

"A key feature of this study is patient and public involvement - one of NIHR's key values - with former prisoners involved in research design and working as 'lived experience researchers', interviewing patients and professionals.

"This study aims to meet gaps in evidence in this area, and hopefully its findings will help improve the quality, accessibility and organisation of services for patients and assist clinicians and professionals working in prisons."

Pavan Dhaliwal, Chief Executive of Revolving Doors Agency, one of the partners involved in the study, said: "We are pleased to provide the lived-experience insight to this important work. People with lived- experience will bring unique perspectives, and this will, we hope, go a long way towards transforming healthcare services in prison."

More information

Read about the study How is cancer care best provided to patients in English prisons?