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Collaborative and consultative patient and public involvement in sexual health research: lessons learnt from four case studies
  1. Lorraine K McDonagh1,2,
  2. Paula Blomquist2,3,
  3. Sonali Wayal2,4,
  4. Sarah Cochrane5,
  5. Josina Calliste2,
  6. Jackie A Cassell2,6,
  7. Natalie Lois Edelman7
  1. 1Research Department of Primary Care and Population Health, University College London, London, UK
  2. 2National Institute for Health Research Health Protection Research Unit in Blood Borne and Sexually Transmitted Infections, University College London, in partnership with Public Health England and in collaboration with London School of Hygiene and Tropical Medicine, London, UK
  3. 3Blood Safety, Hepatitis, Sexually Transmitted Infections (STI) and HIV Division, Public Health England, London, UK
  4. 4Centre for Population Research in Sexual Health and HIV, Institute for Global Health, University College London, London, UK
  5. 5Unity Sexual Health, University Hospitals Bristol NHS Foundation Trust, Bristol, UK
  6. 6Departmentof Primary Care and Public Health, Brighton and Sussex Medical School, Universityof Brighton, Brighton, UK
  7. 7Centre for Health Research, School of Health Sciences, University of Brighton, Brighton, UK
  1. Correspondence to Dr Lorraine K McDonagh, Research Department of Primary Care and Population Health, University College London, London NW3 2PF, UK; l.mcdonagh{at}ucl.ac.uk

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Background

Patient and public involvement (PPI) refers to research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.1 PPI can include patients, carers, service users and the public, referred to here as ‘lay advisors’ (can also be called PPI experts, public advisors, stakeholders, experts by experience). PPI entails contributing in varying degrees to the design, development, conduct, data analysis and dissemination of research.2 Involvement can be consultative (single episode), collaborative (ongoing) or user controlled (actively controlled, directed, and managed by service users).3

PPI is now commonly required in research funding proposals. There are national UK standards for conducting PPI,4 and considerable guidance on how to identify and engage with lay advisors (eg, tailoring PPI to the needs of the study and the willingness of representatives),5 and how to evaluate the impact of PPI.6 7 Most guidance addresses PPI in the context of intervention studies and/or long-term conditions (including long-term stigmatised conditions)8 where lay advisors are sought through regular clinic attendance, patient support groups or charities. In contrast, there is little guidance or precedence on conducting PPI for episodic infection involving singular attendance (eg, chlamydia), for studies which seek to describe population characteristics or risk factors, or for study populations defined by stigmatised behaviours.9 Much sexual health research fits within one of these scenarios, making PPI in this field challenging.9–11

The aim of this paper, therefore, is to share experiences of conducting PPI in sexual health research. Successes and failures from four studies are discussed (see table 1 for an overview of each study). Lessons learnt are presented in relation to three stages of PPI activities: (1) determining who to include as lay advisors; (2) identifying where to access lay advisors; and (3) engaging with those …

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