TABLE 2.
Author, year | Journal name / source | Country of corresponding author | Total number of authors | Number of patient partner authors | Sponsorship / funding | Reporting of Ethics Approval/Guidance for PP involvement. | Overall aim and purpose of study | Study design |
---|---|---|---|---|---|---|---|---|
Bayliss et al, 201628 | Research Involvement and Engagement | UK | 10 | 6 | FP7 HEALTH (Euro‐TEAM) and by Riksbankens Jubileumsfond (The Swedish Foundation for Humanities and Social Sciences) | Did not report | ‘The aim of this paper is to inform the evidence base on effective ways of involving patients in a qualitative meta‐synthesis. This process is evaluated and reflected by patient research partners (PRPs) who provided accounts of their experience’. | open‐ended questionnaire |
Brütt et al, 201733 | Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) | Germany | 7 | 0 | German Federal Ministry of Education and Research | ‘The study was conducted in accordance with the Helsinki Declaration’ | ‘We focused on how patients could be meaningfully involved in our systematic review to complete the review protocol. The aims of the present study were a) that patients contribute and prioritize clinically relevant outcomes of meta‐cognitive interventions, and b) that they evaluate a patient workshop and give their perceptions of research involvement’. | questionnaire (cross‐sectional survey) & focus group |
Coon et al, 201529 | Health Expectations | UK | 9 | 2 | NIHR HTA programme and NIHR CLAHRC South West Peninsula at the Royal Devon and Exeter NHS Foundation Trust | Did not report | ‘Objectives: (i) Describe end‐user involvement in a complex mixed‐methods systematic review of ADHD in schools, (ii) reflect on the impact of end‐user involvement, (iii) highlight challenges and benefits experienced and (iv) provide suggestions to inform future involvement’. | Unsure |
Jamal et al, 201531 | Health Expectations | UK | 6 | 0 | NIHR Public Health Research | Did not report | ‘This study describes the process and impact of consulting with a young people's advisory group to inform decision making in a systematic review on the effects of schools and school environment interventions on children and young people's health’. | Case study |
Myrhaug and Hansen, 201930 | The BMJ Opinion (BMJ blog) | Norway | 2 | 1 | No funding statement included. | Did not report | Researcher and patient perspectives’ on how they collaborated on a systematic review | non‐research ‐ reflection in blog post |
Serrano‐Aguilar et al, 200935 | Social Science and Medicine | Spain | 6 | 0 (with some uncertainty) | Ministry of Health and Consumption of Spain in co‐operation with the Fundacio ´n Canaria de Investigacio ´n y Salud (FUNCIS) | Reported ethics approval for patient participation in rounds of Delphi employed to inform research. | ‘The aim of the present study was to involve patients in developing the early stages of a systematic review process’. | Delphi method |
Staniszewska et al, 201934 | The British Journal of Psychiatry | UK | 10 | 0 | NIHR CLAHRC West Midlands and NIHR CLAHRC North Thames at Bart's Health NHS Trust | While the study received formal ethics approval, the researchers noted in their conclusions that ‘clear guidance on the ethical dimensions to PPIE is needed’ | ‘To conduct a systematic review of published literature, identifying key themes for improving experiences of in‐patient mental healthcare’. | Scoping / systematic review combined |
Troya et al, 201932 | Health Expectations | UK | 6 | 0 | Keele University ACORN studentship; Santander Bank and The Allan and Nesta Ferguson Charitable Trust; West Midlands CLAHRC | ‘Critically reflect on the process, potential impact and identify challenges and opportunities in involving robust PPIE [Patient Public Involvement Engagement] in a doctoral study’. | Case study | |
Vale et al, 201215 | Systematic Reviews | UK | 6 | 3 | Medical Research Council and UK Department of Health NCC RCD Postdoctoral Research Scientist in Evidence Synthesis Award | Did not report | ‘to evaluate [patient partner] involvement with the aim of informing the practice of patient involvement in future systematic reviews’ | Basic Interpretive |
Abbreviation: CLAHRC, Collaboration for Leadership in Applied Health Research and Care; NIHR, National Institute for Health Research.