Tags

Type your tag names separated by a space and hit enter

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.

Authors+Show Affiliations

Sheffield Institute for Translational Neuroscience, University of Sheffield , Sheffield , United Kingdom.Sheffield Institute for Translational Neuroscience, University of Sheffield , Sheffield , United Kingdom. Sheffield Motor Neuron Disease Care and Research Centre, Royal Hallamshire Hospital , Sheffield , United Kingdom.Sheffield Institute for Translational Neuroscience, University of Sheffield , Sheffield , United Kingdom. Sheffield Motor Neuron Disease Care and Research Centre, Royal Hallamshire Hospital , Sheffield , United Kingdom.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

31373235

Citation

Musson, Lucy S., et al. "Exploring Patient and Public Involvement in Motor Neuron Disease Research." Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, vol. 20, no. 7-8, 2019, pp. 511-520.
Musson LS, McDermott CJ, Hobson EV. Exploring patient and public involvement in motor neuron disease research. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20(7-8):511-520.
Musson, L. S., McDermott, C. J., & Hobson, E. V. (2019). Exploring patient and public involvement in motor neuron disease research. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 20(7-8), 511-520. https://doi.org/10.1080/21678421.2019.1643373
Musson LS, McDermott CJ, Hobson EV. Exploring Patient and Public Involvement in Motor Neuron Disease Research. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20(7-8):511-520. PubMed PMID: 31373235.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Exploring patient and public involvement in motor neuron disease research. AU - Musson,Lucy S, AU - McDermott,Christopher J, AU - Hobson,Esther V, Y1 - 2019/08/02/ PY - 2019/8/3/pubmed PY - 2020/7/31/medline PY - 2019/8/3/entrez KW - Motor neuron disease KW - amyotrophic lateral sclerosis KW - patient and public involvement KW - research advisory group KW - thematic analysis SP - 511 EP - 520 JF - Amyotrophic lateral sclerosis & frontotemporal degeneration JO - Amyotroph Lateral Scler Frontotemporal Degener VL - 20 IS - 7-8 N2 - 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. SN - 2167-9223 UR - https://www.unboundmedicine.com/medline/citation/31373235/Exploring_patient_and_public_involvement_in_motor_neuron_disease_research_ L2 - http://www.tandfonline.com/doi/full/10.1080/21678421.2019.1643373 DB - PRIME DP - Unbound Medicine ER -