Table 1 Comparative summary of the main characteristics of included studies

Allard et al. [30], Canada

What does patient engagement mean for Canadian National Transplant Research Program Researchers?

“describe CNTRP researchers’ perspectives on PE before and after their participation in a national priority-setting workshop with patients, caregivers and clinicians.”

“Qualitative exploratory design”, “Semi-structured interviews”, “Content and thematic analysis”

n = 10

Gender: 4 F, 6 M

Research field: 4 kidney transplantation, 3 basic sciences, 1 multi-organ transplantation, 1 donation, 1 legal and ethical issues

Province: 4 ON, 3 AB, 2 BC, 1 QC

Work experience in PE health research: Before the workshop: 4 Yes, 6 No

CNTRP researchers

Patients’ experiential knowledge was viewed to enhance the relevance and quality of medical research within the CNTRP

Baxter et al. [27], England

Evaluating public involvement in research design and grant development: Using a qualitative document analysis method to analyze an award scheme for researchers

“to analyze reported views and experiences regarding the processes of public involvement, in order to investigate elements that might be barriers or facilitators to public involvement in research proposals”

Qualitative design Reports of funding use Analysis with group participatory approaches, qualitative content analysis and framework analysis

n = 25 (reports)

Health and social care researchers

Researchers recognize the variety of potential roles for public members in research and acknowledge how involvement adds value to studies

Boaz et al. [24], UK

Rethinking the relationship between science and society: Has there been a shift in attitudes to Patient and Public Involvement and Public Engagement in Science in the United Kingdom?

“explored researchers’ attitudes to both PPI [Patient and Public Involvement] and PES [Public Engagement in Science]”

Qualitative design Semi-structured interviews and card exercises about PE to stimulate discussion Inductive analysis, grouped in broad themes

n = 19

Level of experience: 4 professors, 1 reader, 1 senior lecturer, 2 research fellows, 3 research associates, 4 post-doctoral researchers, 3 Ph.D. students, 1 research assistant

From three research area (one by center): genetics (6), mental health (7), health services research (6)

Mix of basic biomedical scientists, health service researchers, clinician scientists (doing research and clinical practice)

Work experience in PE health research: mandatory with working at Biomedical Research Centers

Researchers working in 3 Biomedical Research Centers

While researchers are usually open to the implication of PPs and its advantages, their role is understood as peripherical, as “science remains the preserve of scientists”

Boylan et al. [25], UK

“About sixty per cent I want to do it”: Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)—A qualitative interview study

To explore researchers’ experiences and perceptions of PE

Qualitative design Semi-structured interviews (theoretical domains framework) Iterative thematic analysis (theoretical domains framework + inductive code)

n = 36

Gender: 22 F, 13 M

Ethnicity: 24 white British, 3 white European, 6 white other, 1 British Asian

Age: 14 26–44y, 18 45–64y, 3 unspecified

Role: 14 clinical and medical scientific researchers, 18 social scientists and health services researchers, 3 PE coordinators

Working in: England, Scotland, Wales

Variety sought for types of research conducted, research design, level of seniority, degree of experience doing and demographic (age, gender, ethnicity)

Work experience in PE health research: 1 < 1y, 10 1–5y, 8 6–10y, 13 > 10y, 3 unspecified

Researchers

Participants expressed ambivalence, cynicism, and enthusiasm about the PE, an activity that is both rewarding and challenging

Happell et al. [29], Australia/NZ

“I don’t think we’ve quite got there yet”: The experience of allyship for mental health consumer researchers

“to explore the views and opinions of other mental health researchers about working collaboratively with consumer researchers, including strategies to further advancements in this area.”

“Qualitative exploratory design”, “Semi-structured interviews”, “Thematic analysis”

n = 11

6 F, 5 M

Employer: 10 university, 1 non-government organization

Country: 6 New Zealand, 5 Australia

Positions: 3 professors (1 also director), 1 project manager, 4 senior lecturers, 2 associate professors (1 also director), 1 post-doctoral research fellow

Disciplines: 2 psychiatry, 4 mental health nursing, 2 social work and 2 psychology, 1 discipline not mentioned

Work experience in PE health research: purposive sampling of researchers known by the research team

Established mental health researchers

Health researchers find value in PE. They can support and facilitate engagement by encouraging active and meaningful participation

Happell et al. [28], Australia/NZ

“Chipping away”: non-consumer researcher perspectives on barriers to collaborating with consumers in mental health research

“to explore the opinions and experiences of other mental health researchers from Australia and New Zealand regarding working collaboratively with consumers in the conduct of research, with the view to enhance understanding of how consumer involvement in research could be increased.”

“Qualitative exploratory design”, “Semi-structured interviews”, “Thematic analysis”

n = 11

6 F, 5 M

Employer: 10 university, 1 non-government organization

Country: 6 New Zealand, 5 Australia

Positions: 3 professors (1 also director), 1 project manager, 4 senior lecturers, 2 associate professors (1 also director), 1 post-doctoral research fellow

Disciplines: 2 psychiatry, 4 mental health nursing, 2 social work and 2 psychology, 1 discipline not mentioned

Work experience in PE health research: purposive sampling of researchers known by the research team

Mental health researchers

Barriers to PE include power disparities between researchers and PP. Developing simultaneous collaboration strategies for collaboration is the most effective and should be prioritized

Paul et al. [26], UK

Involving the public in mental health and learning disability research: Can we, should we, do we?

To explore attitudes of researchers working in mental health and learning disability services towards PE in research

“Qualitative exploratory design”, “Semi-structured interviews and reflexive journal”, “Framework analysis”

n = 8

Research role: 2 clinical studies officers, 1 research manager, 3 principal investigators, 2 clinical trials coordinators Research background: 6 randomized controlled trial, 2 observational study, 1 various, 1 feasibility study, 1 qualitative study

Client group: 1 learning disability, 1 mental health, 6 mental health + learning disability

Professional group: 2 medicine, 1 clinical psychology, 5 none

NHS (National Health Services) Foundation Trust staff involved in research

Even though UK has a history of PE practices and developed clear guidelines, challenges persist for full integration of PPs across the complete research process

Puerta et al. [31], Singapore

Researchers’ perspectives on public involvement in health research in Singapore: The argument for a community‐based approach

To explore how researchers working in health research understand the principles, role and scope of PE. Explore challenges and opportunities of PE implementation in Singapore

“Qualitative exploratory design”, “Semi-structured interviews and reflexive notes”, “Thematic framework analysis”

n = 20 Gender: 11 F, 9 M

Ethnic group: 14 Chinese, 3 Caucasian, 2 Indian, 1 Malay

Position: 1 research follow, 5 doctoral researchers, 2 GP researchers, 3 assistant professors, 3 associate professors, 2 research managers, 1 adjunct associate professor, 2 professors, 1 occupational therapist Research experience: 3 < 1y, 5 1-5y, 2 6-10y, 10 > 10y

Research field: 2 pregnancy & parenting, 3 older adults, 2 neurology, 2 family medicine, 4 chronic conditions, 2 psychiatry, 2 general population, 2 physiology of ageing, 1 patients with cancer

Researchers

Singapore’ culture of participatory collective model has the potential to contribute and inspire more inclusive PE practices in research communities around the world

Staley et al. [11], UK

The impact of involvement on researchers: a learning experience

To explore “researchers’ experience of involvement and in particular what they learn from the process”

"Qualitative design", "Semistructured interviews", "Theoretical thematic analysis"

n = 8

Disciplines: 7 clinical research project, 1 basic science project

Working in: England, Scotland, Wales

Researchers who worked in a pilot PE project by Parkinson’s UK

PE experiences lead researchers to acquire new skills and knowledge, as well as to change their values, their preferences, and their research practices

Thompson et al. [22], UK

Health researchers attitudes towards public involvement in health research

To explore “university health researchers’ attitudes and opinions towards public involvement in health research.”

“Qualitative exploratory constructivist design”, “Semi-structured interviews with constant comparative method”, “Broad interpretive iterative analysis loosely guided by grounded theory”

n = 15

Gender: 10 F, 5 M Research background: 10 health service research, 2 clinical trials, 3 biomedical/laboratory

Academic grade: 1 research fellow, 1 senior research fellow, 1 clinical trials manager, 2 professor, 1 principal clinical lecturer, 2 research associate, 1 research officer, 2 research fellow, 2 lecturer, 1 senior lecturer, 1 reader

Working in: England, Wales

University health researchers

Researchers’ understanding of PE varies. While the theoretical benefits of PE are understood, apprehensions, and uncomfortable feelings when implementing PE are common

Ward et al. [23], UK

Critical perspectives on ‘consumer involvement’ in health research: Epistemological dissonance and the know-do gap

To present “data from a qualitative study of researchers about their perceptions and experiences of consumer involvement in research.”

“Qualitative design”, “Semi-structured interviews”, “Interpretive analysis with open coding and categorization from grounded theory”

n = 15

Gender: 10 F, 5 M

Research background: 2 health services research (qualitative), 2 clinicals trials (quantitative), 3 health services research (mixed methods), 2 health services research (quantitative), 3 laboratory research (quantitative), 1 primary care research (mixed methods), 1 population based research (mixed methods), 1 medical statistics (quantitative)

Discipline: 2 social science, 2 medicine, 3 public health, 2 psychology, 3 biomedicine, 1 general practice, 1 nursing, 1 statistics

Working in: England, Wales

University health researchers

A common issue of raises by researchers about PE is “the tensions between researchers’ perceptions of the potential benefits of, and their actual practices in relation to PP”