Tallantyre, EC, Evangelou, N, Bale, C et al. (8 more authors) (2020) Achieving effective patient and public involvement in international clinical trials in neurology. Neurology: Clinical Practice, 10 (3). ISSN 2163-0402
Abstract
There is a growing need for patient and public involvement (PPI) to inform the way that research is developed and performed. International randomized controlled trials are particularly likely to benefit from PPI, but guidance is lacking on how or when it should be incorporated. In this article, we describe the PPI process that occurred during the design and initiation of an international treatment clinical trial in MS. PPI was incorporated using a structured approach, aiming to minimize bias and achieve equivalence in study design, implementation, and interpretation. Methods included PPI representation within the study research team, and the use of focus groups, analyzed using thematic framework analysis. We report the outcomes of PPI and make recommendations on its use in other neurology clinical trials. By sharing our model for PPI, we aim to maximize effectiveness of future public involvement and to allow its effect to be better evaluated.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Dentistry (Leeds) > Applied Health and Clinical Translation (Leeds) The University of Leeds > Faculty of Education, Social Sciences and Law (Leeds) > School of Sociology and Social Policy (Leeds) |
Funding Information: | Funder Grant number Multiple Sclerosis Society Award Ref: 30 |
Depositing User: | Symplectic Publications |
Date Deposited: | 11 Jan 2022 17:34 |
Last Modified: | 11 Jan 2022 17:34 |
Status: | Published |
Publisher: | Lippincott Williams and Wilkins |
Identification Number: | 10.1212/CPJ.0000000000000739 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:151874 |