Study highlights importance of "lived experience" provided by cancer patients in prisons

Reviewed by Emily Henderson, B.Sc.Jun 29 2021

In a paper published by Research Involvement and Engagement, the University of Surrey and its partners highlight the importance and value of "lived experience" that only people in prison can provide to shape meaningful research and policy decisions.

What is unique about the study is the combination of interviews with current and former people in prison, 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.

Moving forward, 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. The research was funded by the National Institute for Health Research (NIHR), the research partner of the NHS, public health and social care.

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 Health Services and Delivery Research Programme, which funded the study, 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."

People in contact with the criminal justice system often experience significant health inequalities -- a higher burden of disease and less access to health services. Addressing the health needs of this population can contribute to reducing inequalities in wider society."

Pavan Dhaliwal, Chief Executive, Revolving Doors Agency

"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."