The patients, the professional researcher and the PPI adviser: How we helped to design a study for Parkinson’s Disease patients
2012 Conference
Abstract:
This presentation covers different perspectives on patient and public involvement (PPI) – members of a Parkinson’s Disease group, a clinical research team and an advisor from the Research Design Service. We present our stories of how we collaborated to design a study and a successful funding application. We will describe our different experiences and explain what we have learned from one another along the way.
Our local Parkinson’s Disease Group meets for support and is interested in research. We discussed how some of our prescribed medicines seemed to make our memories worse. This is very important to patients and carers as it is risky to be forgetful and is not pleasant. We met to discuss the research and made sure the memory tests made sense to us. We are pleased that the study has been funded and look forward to working with the research team.
As a researcher I had been in contact with the patient group for some time and became interested in how people described their own reactions to medication (or in the case of carers, the reactions of people they cared for). My expertise is in the field of memory loss and I was aware that science is as yet unable to say which forms of medication are better or worse for this particular effect.
As an RDS PPI advisor I was hesitant about offering advice to a researcher who is well established in her own field. However, a face to face meeting was very useful in explaining PPI and what funders would be looking for. An RDS PPI bursary was awarded so that the researcher could meet with patients to talk through the study design.
The study has been funded by and by the time of the conference we will be able to report on progress.
Authors
Carter ~ 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 authorEdelstyn ~ Nicky
Senior Lecturer in Cognitive Neuroscience, Keele University. Dr Nicky Edelstyn belongs to the Centre for Psychological Research at Keele University. Her major areas of research concern executive function and memory in patients with thalamic stroke and Parkinson’s disease. Current projects are looking at heterogeneity in Parkinson’s disease, and relationship to mental functioning and medication.
View all articles by this authorShepherd ~ Tom
PhD student in the Centre for Psychological Research at Keele University. Tom’s research interests are in Parkinson’s disease, specifically focused on the relationship between Parkinson’s disease phenotypes and medication-dependent effects on memory and attention.
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