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Randomized Controlled Trial
. 2022 Feb;25(1):191-202.
doi: 10.1111/hex.13362. Epub 2021 Sep 28.

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

Kathryn Greenwood  1   2 , Sam Robertson  2 , Evelin Vogel  2 , Claire Vella  2 , Thomas Ward  3   4 , Alison McGourty  2 , Cat Sacadura  2 , Amy Hardy  3   4 , Mar Rus-Calafell  4 , Nicola Collett  5 , Richard Emsley  6 , Daniel Freeman  5   7 , David Fowler  1   2 , Elizabeth Kuipers  3   4 , Paul Bebbington  8 , Graham Dunn  9 , Philippa Garety  3   4 ; SlowMo Patient and Public Involvement (PPI) team
Affiliations
Randomized Controlled Trial

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

Kathryn Greenwood et al. Health Expect. 2022 Feb.

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.

Keywords: Cognitive Behavioural Therapy; Patient and Public Involvement (PPI); digital health; impact; mobile applications; paranoia.

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Conflict of interest statement

Prof. Freeman reported receiving personal fees from Oxford VR outside of the submitted work. No other disclosures were reported.

Figures

Figure 1
Figure 1
Interrelationship between SlowMo study and Patient and Public Involvement meetings
Figure 2
Figure 2
Service user consultant and peer researcher's written subjective experiences of Patient and Public Involvement in the SlowMo study
Figure 2
Figure 2
Service user consultant and peer researcher's written subjective experiences of Patient and Public Involvement in the SlowMo study
Figure 2
Figure 2
Service user consultant and peer researcher's written subjective experiences of Patient and Public Involvement in the SlowMo study
See this image and copyright information in PMC

References

    1. Garety P, Ward T, Emsley R, et al. The effects on paranoia of SlowMo, a blended digital therapy targeting reasoning for people with psychosis: a randomised controlled trial. JAMA Psychiat. 2021;78(7):714‐725. 10.1001/jamapsychiatry.2021.0326 - DOI - PMC - PubMed
    1. INVOLVE . Definition of PPI. Accessed May 6, 2020. https://www.invo.org.uk/
    1. Chalmers I. What do I want from health research and researchers when I am a patient? Br Med J. 1995;310:1315‐1318. - PMC - PubMed
    1. Crocker JC, Ricci‐Cabello I, Parker A, et al. Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta‐analysis. Br Med J. 2018;363:k4738. - PMC - PubMed
    1. Staley K. Exploring impact: public involvement in NHS. Public Health and Social Care Research. INVOLVE; 2009.

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