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The impact of Patient and Public Involvement in the SlowMo study: Reflections on peer innovation

Research output: Contribution to journalArticlepeer-review

the SlowMo Patient and Public Involvement (PPI) team

Original languageEnglish
JournalHealth Expectations
DOIs
Accepted/In press2021

Bibliographical note

Funding Information: The Patient and Public Involvement team members who have given permission to use their names were Alice, Angie, Dan, Amy, Helen and Natalie (First names only) and [pseudonyms] Anthony and Alex. One PPI team member sadly died in the course of the study; she made an important early contribution and provided intelligence, kindness and wisdom. We would like to acknowledge the contribution of the additional research workers on the trial: Ujala Ilyas, Elâ Örücü, Valerija Lvova, Phoebe Marple‐Horvat, Rikesh Halkoree, Eva Tolmeijer, Vicci Smallman, Anna East, Catherine Belton and Michaela Rea, and the clinical teams in the South London and Maudsley NHS Foundation Trust, the Oxford Health NHS Foundation Trust and the Sussex Partnership NHS Foundation Trust for their support. This project (15/48/21) is funded by the Efficacy and Mechanism Evaluation (EME) Programme, a Medical Research Council and National Institute for Health Research partnership. P. G. and R. E. are partly funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at the South London and Maudsley NHS Foundation Trust and King's College London. R. E. is supported by an NIHR Research Professorship (NIHR300051). D. F. is supported by an NIHR Research Professorship (NIHR‐RP‐2014‐05‐003) and the NIHR Oxford Health Biomedical Research Centre (BRC‐1215‐20005) and declares personal fees from the University of Oxford spin‐out company, Oxford VR. The views expressed in this publication are those of the author(s) and not necessarily those of the MRC, NHS, NIHR or the Department of Health and Social Care. Funding was obtained by Profs Garety, Emsley, Greenwood, Freeman, Fowler, Kuipers, Bebbington and Dr. Hardy. Publisher Copyright: © 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

King's Authors

Abstract

Background: The SlowMo study demonstrated the effects of SlowMo, an eight-session digitally supported reasoning intervention, on paranoia in a large-scale randomized-controlled trial with 362 participants with schizophrenia-spectrum psychosis. Aim: The current evaluation aimed to investigate the impact of Patient and Public Involvement (PPI) in the SlowMo study. Method: PPI members were six women and three men from Sussex, Oxford and London with experience of using mental health services for psychosis. They received training and met at least 3-monthly throughout the project. The impact of PPI was captured quantitatively and qualitatively through (i) a PPI log of recommendations and implementation; (ii) written subjective experiences of PPI members; (iii) meeting minutes; and (iv) outputs produced. Results: The PPI log revealed 107 recommendations arising from PPI meetings, of which 87 (81%) were implemented. Implementation was greater for recruitment-, data collection- and organization-related actions than for dissemination and emergent innovations. Qualitative feedback revealed impacts on study recruitment, data collection, PPI participants' confidence, knowledge, career aspirations and society more widely. Outputs produced included a film about psychosis that aired on BBC primetime television, novel webpages and journal articles. Barriers to PPI impact included geography, travel, funding, co-ordination and well-being. Discussion: A future challenge for PPI impact will be the extent to which peer innovation (innovative PPI-led ideas) can be supported within research study delivery. Patient and Public Contribution: Planned Patient and Public Contribution in SlowMo comprised consultation and collaboration in (i) design, (ii) recruitment, (iii) qualitative interviews and analysis of service users' experiences of SlowMo therapy and (iv) dissemination.

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