Exploring patient and public involvement in motor neuron disease research

Abstract

Objectives: Patient and public involvement (PPI) is a relatively new practice whereby researchers involve patients and the public in the conduct of their research. The Sheffield Motor Neurone Disorders Research Advisory Group (SMNDRAG) is one of the first groups to specialise in motor neuron disease (MND). Its members include people living with MND, carers, relatives, volunteers, clinicians, and scientists. Our aim was to explore the experiences of those who participate in, organise and work with the SMNDRAG.

Methods: We conducted 13 semi-structured interviews: 10 with members of the SMNDRAG and three with researchers who have worked with the group. We used thematic analysis to identify ways in which the group influenced research and the barriers and enablers to PPI.

Results: A number of motivations for participating in the SMNDRAG were reported but the majority were altruistic. The SMNDRAG offered individuals psychosocial and intellectual benefits. The SMNDRAG has overcome a number of practical and psychological barriers to developing a successful and effective collaborative partnership resulting in a positive impact on research and researchers at each stage of the research process. For example, the group identified research priorities which ensured that research was patient-focused. However, several barriers remain, including the lack of diversity within the group and the perception that PPI participation requires a “certain type of person.”

Conclusions: PPI can make a valuable contribution to all aspects of research and can have a positive impact on those involved. We recommend ways in which PPI can and should be incorporated into research.

Keywords:

• Motor neuron disease
• amyotrophic lateral sclerosis
• patient and public involvement
• research advisory group
• thematic analysis

Acknowledgements

The authors are grateful to the members of the Sheffield Motor Neurone Disorders Research Advisory Group (SMNDRAG), based at the Sheffield Institute for Translational Neuroscience for their support throughout this project.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article. EH was a specialty registrar working in MND research with experience working with the SMNRAG and in the MND clinic. CMD is a consultant neurologist working in the MND clinic. He set up the SMNDRAG and also participated in the study. Both EH and CMD have an interest and experience in qualitative research in MND. LM was a student completing an MSc in Clinical Neurology and is interested in MND research. LM received training in interviewing by reading transcripts, practicing and observing interviews. She had no prior involvement with the SMNDRAG and her independent conclusions were supported by the co-authors and the SMNDRAG itself.

Additional information

Funding

EH was funded by the National Institute for Health Research (NIHR) Doctoral Research Fellowship award [DRF-2013-06-076] and later an NIHR/Health Education England Clinical Lecturer award. CMD is funded by the NIHR Sheffield Biomedical Research Center (Translational Neuroscience) [IS-BRC-1215-20017].