Evaluating the impact of patient, carer and public involvement in the NIHR Stroke Research Network
2012 Conference
Abstract: We will present our approach to the evaluation of patient, carer and public involvement (PCPI) within the National Institute for Health Research (NIHR) Stroke Research Network (SRN).
Summary: The NIHR SRN advocates PCPI at all stages of research. It is important to evaluate the impact of PCPI upon research processes and outcomes and understand what works well and why.
Method: Systems were developed and processes implemented to collect relevant data. A number of data collection methods were pulled together in a toolkit. Each lay member completes regular questionnaires to identify their specific input to either NIHR SRN meetings or the research projects to which they are contributing. Data will also be collected from individuals who participate in Trial Steering Committees, Data Monitoring Committees and Local Research Networks. Evidence is also being gathered from researchers to identify changes that have occurred to their research as a direct result of contributions from lay members.
Learning Points:
- Evidence of the impact of public involvement can be collected in a systematic way by Research Networks.
Discussion Points:
- Networks need to consider which impacts of public involvement and why.
- How data is to be used to improve involvement.
Dr Chris McKevitt, Dr Peter Coleman and Marilyn Weerasinghe also contributed to the development of the paper.
Authors
Boote ~ Jonathan
Jonathan Boote is Reader in Patient Experience and Public Involvement, Centre for Research in Primary and Community Care, University of Hertfordshire. He is a Fellow of the Royal Society of Arts, and a member of INVOLVE and the International Collaboration on Participatory Health Research.
View all articles by this authorGoose ~ Margaret
Margaret Goose OBE is a lay member of the NIHR SRN and sits on the Patient Carer and Public Involvement Clinical Studies Group. She is Vice-President of The Stroke Association and a lay trustee of the Royal College of Physicians and a member of their patient and carer network.
View all articles by this authorJones ~ Zena
Zena Jones is the Patient, Carer, Public Involvement and Engagement (PCPIE) Manager for the National Institute for Health Research (NIHR) Clinical Research Network (CRN) (Stroke). Based in Newcastle upon Tyne, Zena has been responsible for developing and implementing the involvement strategy of the network.
View all articles by this authorRodgers ~ Helen
Helen Rodgers is Professor of Stroke Care at Newcastle University. She is deputy director of the NIHR Stroke Research Network with responsibility for patient, carer and public involvement. She is a consultant stroke physician and her research interest is development and evaluation of stroke services.
View all articles by this authorWilde ~ Kate
Research Fellow, Wye Valley NHS Trust. Dr Kate Wilde completed her PhD in Pharmacy in 1994 from Manchester University, working for the university as a researcher before relocating to Stoke-on-Trent. Kate worked as a Research Fellow for Keele University until 2004, then became an NHS Clinical Governance Manager. She became Stroke Research Network manager in 2006.
View all articles by this authorWilliamson ~ Judith
Judith Williamson is a stroke survivor who is involved in the NIHR Stroke Research Network as a lay member for the Patient, Carer and Public Involvement Clinical Studies Group. She has a particular interest in research in regard to helping stroke survivors return to work and the emotional effects of stroke on survivors and their families.
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