Exploring patient and public involvement in motor neuron disease research

Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration
Lucy S MussonEsther V Hobson

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 p...Continue Reading

References

Jun 25, 2005·International Journal of Health Care Quality Assurance Incorporating Leadership in Health Services·Virginia MinogueJohn Girdlestone
May 9, 2006·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Jenny Weinstein
Nov 7, 2006·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·John Powell, Aileen Clarke
Sep 18, 2007·International Journal for Quality in Health Care : Journal of the International Society for Quality in Health Care·Allison TongJonathan Craig
Aug 12, 2009·Population Health Management·Ronald DeprezJia Ling Loo
Sep 2, 2009·Prostate Cancer and Prostatic Diseases·J W Moul
Sep 10, 2011·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Steve IliffeDouglas Mitchell
Jan 24, 2012·Journal of Medical Ethics·Jonathan IvesSabi Redwod
Nov 28, 2013·Qualitative Health Research·Jill ThompsonRosemary Barber
Jul 9, 2014·Archives of Environmental Contamination and Toxicology·Matthew D Linn, Paul A Moore
Feb 27, 2016·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Susan BaxterChristopher J Mcdermott
Sep 1, 2016·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Alexander J McGeachanChristopher J McDermott
Nov 9, 2017·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration
Nov 16, 2018·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Francesca PaleseFederica Edith Pisa
Nov 21, 2018·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration
Apr 24, 2019·Medicina oral, patología oral y cirugía bucal·A-T Çebi

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Citations

May 28, 2020·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Richard BedlackTerri Heiman-Patterson
May 1, 2020·Neurodegenerative Disease Management·Anne HogdenKaren Hutchinson
Aug 26, 2020·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·James D BerryStephen Apple

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