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Collaborative and consultative patient and public involvement in sexual health research: lessons learnt from four case studies

McDonagh, Lorraine K., Blomquist, Paula, Wayal, Sonali, Cochrane, Sarah, Calliste, Josina, Cassell, Jackie A., Edelman, Natalie Lois (2019) Collaborative and consultative patient and public involvement in sexual health research: lessons learnt from four case studies. Sexually Transmitted Infections, 96 (2). pp. 96-100. ISSN 1368-4973. E-ISSN 1472-3263. (doi:10.1136/sextrans-2018-053922) (KAR id:103734)

Abstract

Objectives: Patient and Public Involvement (PPI) is increasingly mandated in health research. However, there is little guidance on conducting PPI for research on episodic infections, risk factors, hard-to-reach populations, or stigmatised behaviours. The aim of this paper is to address the gap in PPI guidance by illustrating different approaches to challenging PPI scenarios. Methods: Four case studies of sexual health research PPI, each of which discusses three stages of PPI (defining, accessing and engaging with lay advisors). Results: Researchers may need to use broadly define lay advisors; involving those with insight into population of interest can be beneficial. Alternative and multiple routes to access patients/public should be considered. Flexible means of engagement can enable lay advisors to contribute anonymously, remotely and/or opportunistically. Conclusions: Case studies may help researchers in sexual health (and other fields) to better meet the challenges of PPI for studies which concern hard-to-reach populations, episodic infections, risk factors, and stigmatised behaviours.

Item Type: Article
DOI/Identification number: 10.1136/sextrans-2018-053922
Additional information: This paper is an independent research by the National Institute for Health Research. The research is funded by the National Institute for Health Research Health Protection Research Unit (NIHR HPRU) in Blood Borne and Sexually Transmitted Infections at University College London, in partnership with Public Health England and in collaboration with the London School of Hygiene and Tropical Medicine (grant number: HPRU-2012-10023). Case study 4 presents independent research commissioned by the NIHR, under the Research for Patient Benefit Programme (PB-PG-0407-13149).
Subjects: H Social Sciences
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Funders: National Institute for Health Research (https://ror.org/0187kwz08)
Depositing User: Milly Massoura
Date Deposited: 28 Nov 2023 15:00 UTC
Last Modified: 14 Jan 2024 06:02 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/103734 (The current URI for this page, for reference purposes)

University of Kent Author Information

Edelman, Natalie Lois.

Creator's ORCID: https://orcid.org/0000-0001-6935-8877
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