CAPER - Consent, Advocacy & Proxies in End of Life Research

About this site

This website brings together a range of information about work undertaken to improve the inclusion of adults with capacity and communication challenges in research towards the end of life.

The website has been developed as part of NHS England’s Research Engagement Network (REN) programme, which aims to identify and address structural barriers to research participation faced by certain communities and individuals. Our group is exploring challenges around consent, use of proxies in decision making and understanding the right participatory approaches in end of life research.

This project is hosted by the Norfolk and Waveney Integrated Care BoardIf you are interested in hearing more about the project please contact Caroline.barry@nnuh.nhs.uk

For wider resources relevant to conducting research for adults with impaired capacity, please see the CONSULT website: Capacity consent research

RESOURCES

Resources

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Training

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Research

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Get Involved

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MEET THE TEAM

Dr Caroline Barry

Consultant in Palliative Medicine and Associate Professor at the Norfolk and Norwich Hospital and Clinical Lead for the Project

Clara Yates

Dr Clara Yates is Associate Director of Research at NHS Norfolk and Waveney ICB, supporting overall organisation/ project delivery/ oversight, formal reporting and links to the wider ICS.

Dr Guy Peryer

Dr Guy Peryer is a senior research fellow at UEA. He is supporting community participation and the evaluation process.

Dr Martyn Patel

Consultant Geriatrician Associate Professor, Norfolk and Norwich University Hospital, Ageing Research Specialty Lead for CRN East of England.

Liz Pryor

Liz and her team at the Anne Robson Trust are working as our VCSFE partners, bringing their experience and knowledge around volunteers supporting people at the end of life, both in a hospital and community setting.

Heather Edwards

Heather Edwards, musician, Come Sing lead and PPI

Alex Howard

Managing Director of AAH Software. Supporting clinical research through their software, Mantal.

Karen Bunning

Professor of Language, Communication & Developmental Disability, University of East Anglia, with a particular focus on severe to profound, intellectual associated with complex communication needs.

Professor Rob Heywood

Dr Victoria Shephard

Jen Bedford

Miriam Craske

Senior Research Associate Miriam joins the research fresh from completing her PhD exploring how pharmacist-led medication reviews in primary care can be optimised to improve outcomes for patients with long-term conditions, in which she completed two literature reviews alongside empirical qualitative research.