An evaluation of how people with musculoskeletal conditions are actively involved in research
2012 Conference
Abstract:
The Arthritis Research UK Primary Care Centre involves patients, carers and members of the public (PPI) in its research. An evaluation study was completed in 2012 and this presentation focuses on findings. These show who gets involved and the positive and negative difference that this makes to themselves, to researchers and to the organization. A sample of staff and Research Users were interviewed and documents and field notes were also used in the study.
Barriers to involvement include lack of planning, researcher attitudes and meeting times. What seems to help is friendly staff and planning ahead. Users got involved for different reasons including “giving something back to society”. Several report a sense of satisfaction from being involved in research, although sometimes people have felt over burdened. In some instances, a lack of planning led to confusion so that Users were left out of a meeting they might have participated in.
PPI takes time and costs the organization money but has made a difference to studies through giving researchers the chance to discuss their ideas and improve research where necessary. We will discuss the methods we used for evaluation and will share learning from our experiences (mistakes and positive experiences).
Evaluation of patient and public involvement : a case study
Authors
Beech ~ Roger
Roger Beech is a Reader in Health Services Research within the Research Institute for Primary Care and Health Sciences, Keele University. He is also the Director of the NIHR Research Design Service West Midlands (Keele University Hub) and the Associate Director of Public Health (Research) for Central and Eastern Cheshire PCT. He has a background in organizational and health services research and a long history of research that supports the development and evaluation of health and social care services for older people. Early research concerned services for patients with stroke in the UK and mainland Europe. More recent work has focused on generic health and social care services delivered “closer to home”. For example: an SDO funded study of factors surrounding unplanned hospital admissions by older people; national and local evaluations of the Department of Health’s Partnership for Older People Project; a New Dynamics of Ageing study into ways of promoting social engagement amongst older people living in disadvantaged communities.
View all articles by this authorCarter ~ Pam
Research Fellow (User Involvement), West Midlands RDS/Arthritis Research UK National Primary Care Centre, Keele University. Dr Pam Carter is a member of INVOLVE and a patient and public involvement adviser for the West Midlands Research Design Service. Half of Pam’s job is about providing PPI advice and the other half is about researching PPI. Pam has recently finished an evaluation of PPI that produced recommendations for improvement. She recently took part in an international workshop linked to the Cochrane Collaboration on research priority setting. Pam’s research interests are in the social relations of knowledge production.
View all articles by this authorJinks ~ Clare
Clare Jinks is a researcher who works at the Arthritis Research UK Primary Care Centre. Her research interest is Osteoarthritis. She has experience of setting up and running research users' groups. She has provided advice to researchers and clinicians who want to develop PPI in their research.
View all articles by this authorOng ~ Bie Nio (Pauline)
Bie Nio (Pauline) Ong is Professor of Health Services Research at the Arthritis Research UK Primary Care Centre, Keele University. She has a long-standing interest in patient and public involvement, both as an academic and as a past PCT Chair. She chairs the Centre's Research User Group. Her current research focuses on people's experiences of chronic pain and mutli-morbidity, complex interventions in primary care and health policy.
View all articles by this author« Go back
