Table 1.
Overview of included articles
| Author | Country | Design | Area | Cycle | Focus of article | Partner group | Framework for inclusion | Themes | Co-author-ship |
|---|---|---|---|---|---|---|---|---|---|
| Abrehart [12] | UK | Feasibility study | Pediatrics | Whole | Development of a medical imaging test for children with constipation | Children aged 8–18 | GRIPP2 | Relations through shared endeavor/ Learning/ Direct impact/ Consistency/ Impact on children’s development/ Building rapport | Yes |
| *Alexander [13] | USA | Mixed methods | Pediatrics | Whole | Childhood obesity—Evaluation of a childhood obesity treatment pilot program | Parents of obese children | CBPR | Facilitating/ Definition of success/ Training/Skills used in everyday life/ From stakeholder to PR | No |
| Anang [14] | Canada | Qualitative | Mental health | Whole | Suicide prevention among Inuit Youth | Youth living in suicide risk communities | CBPR | Community partnership/ Training/ Employment/ Sense of ownership/ Vulnerable group | No |
| *Barn [15] | Canada | Evaluation | Pulmonology | Agendas, Governance | Asthma and COPD—evaluation of a PR group as resource for several research projects | Patients with Asthma and COPD | iKT | Confidence to contribute/Training/Peer support/PEIRS-22 evaluation tool | Yes |
| Beeker [16] | Germany | Mixed methods | Mental health | Whole (after protocol) | Qualitative description of a process evaluations of innovative models of psychiatric care in Germany | Mental health service users | Not specified | Structural organization/ Routines/ Supervision/ Tandeming/ Heterogeneity/ Conflicts/ Power/ Personal growth | Yes |
| *Beighton [17] | UK | Register study | Health Services | Outcome measures, Analysis, Dissemi-nation | Data analysis of effectiveness of annual health checks for adults with intellectual disabilities | Adults with intellectual disabilities, carers | Participatory approach | Longstanding relationships/ Authenticity/ Legitimacy/ Challenges/ Dissemination/ Increased confidence | No |
| Birch [18] | Europe | Mixed methods | Rheumatology | Predetermined project areas | Multi-site European study on biomarkers for early detection of arthritis to predict development | Patients with arthritis and relatives | Not specified | Involvement in specific tasks/ Impact on study process/ Training/ Feedback/ Impact on dissemination/ Inability to contribute | Yes |
| *Bourque [19] | Canada | Mixed methods | Oncology | Whole | Survivor needs of adolescent and young adults with brain tumors | Parents of—and youth with prior brain tumors | The Nesting Dolls Design | ‘Sherpas’ as stakeholders/ Empowerment/ Inclusion in whole process/ Capability to participate and facilitation of this/ Adapting and sharing knowledge | Yes |
| Brutt [20] | Germany | Review | Mental health | Outcomes, Analysis, Lay Summary | PPIE in a systematic review on metacognitive interventions | Mental health service users | Not specified | Focus group discussions/ Predefined protocol/ Remuneration | No |
| *Burrows [21] | UK | Mixed methods | Digital health | Design | Evaluation of collaboration in a large digital development study on home health technology | Not specified/ Advisory group | Gradinger et al.’s value systems/ GRIPP2 | Advisory groups/ Systematic approach to involvement/ Value systems | No |
| *Carr [22] | Canada | Survey | Rheuma-tology | Whole (after topic selection) | Co-design of patient experience survey | Patients with arthritis | PED framework | Peer-to peer with PaCER facilitators/ Online meetings/ Recommendations to research group | Yes |
| Castensøe-Seidenfaden [23] | Denmark | Mixed methods | Digital health | Whole | Development of app for self-management of type 1 diabetes mellitus | Young people with type 1 diabetes | Participatory Design | Conflict solving/ Value of diverse teams/ Separate steering group and PRs | No |
| *Chiu [24] | USA | Mixed methods | Oncology | Whole | Psychosocial impact of participating in activities (dragon boating) for breast cancer survivors | Breast cancer survivors | Participatory research | Development of survey/ Power sharing/ Mutual benefit/ Reciprocity | No |
| *Cook [25] | UK | Service design | Mental health | Whole (after topic selection) | Creating a Mindfulness-based course to support parent carers | Parent carers for adults with learning disabilities | Action Research/ Participatory Health research | Communicative spaces/ Impact: researchers, project | No |
| *Dawson [26] | UK | Qualitative | Minority health | Whole | PPIE in a doctoral project on inclusion of minority groups in PPI | BAME | INVOLVE | Relationship development/ PR reflections/ Researcher reflections/ Mapping research values | Yes |
| Dennehy [27] | Ireland | Qualitative | Digital health | Whole | Evaluation of the work an advisory group of young people did in a qualitative research project | Young people at risk of cyber bullying | Lundy’s Model of Participation | Voice/ Influence/ Right to be included | No |
| *Devonport [28] | UK | Intervention | Obesity and binge eating | Design, Analysis | Reflections on an intervention study on emotional eating with patients and practitioners | Patients with binge eating disorders/ weight management | INVOLVE | Group dynamics/ Development of relationships/ Difference in knowledge and what is shared/ Rights-based approach | No |
| Dewa [29] | UK | Qualitative | Mental health | Whole | Reflections on co-production of a qualitative interview study | 7 Young people with mental health difficulties | McPin Foundation Priority Setting/ James Lind Alliance | Describing the study against principles of coproduction/ Recommendations/ Coproducing interviews and analysis | Yes |
| *de Wit [30] | Nether-lands | Evaluation | Rheuma-tology | Predeter-mined project areas | Evaluation of a pilot study model for structural involvement in rheumatology research | Patients with arthritis | FIRST model | Challenges/ Guidance/ Researcher and patient needs/ structural partnerships | No |
| Dovey-Pearce [31] | UK | Service design | Health Services | Unclear | Reflections on a 5-year longitudinal health research program supporting young people transition to adulthood | People with intellectual disabilities and carers | INVOLVE/ GRIPP | Longstanding relationships/ Learning outcomes | Yes |
| *Faulkner [32] | UK | Qualitative | Mental health | Whole | Building capacity to support mental health service users’ experiences of hate crimes | Survivors of hate crime due to disabilities | Survivor research/ INVOLVE | Description of methods and process to demonstrate value of the approach/ User-led research/ Legitimacy/ Program development/ | Yes |
| *Frankena [33] | Europe | Case study | Several areas | Whole over several projects | Evaluation of 4 European case studies in health research including people with intellectual disabilities | People with intellectual disabilities | Rohlfing’s integrative framework | Partnership development/ Outcomes for all partners and projects/ Legitimacy | Yes |
| *Froggatt [34] | UK | Mixed methods | Health services | Design, Delivery | Qualitative evaluation of PR involvement in an evaluation on health promotion in primary care | Care home residents | APPROACH | Benefits/ Relationships/ PR management | No |
| *Gammon [35] | Norway | Service design | Mental health | Idea, Design | Case study evaluation of service user involvement in the design phase of an online tool for self help | People with mental illness | CBPR | Benefits for study and participants/ Partnerships/ Mutual learning/ Legitimacy | Yes |
| Grant [36] | UK | HTA | Digital health | Design | Developing E-mental health platforms for school children | Young school children | Not specified | Impact: project/ Focus groups | No |
| Grundry [37] | UK | Qualitative | Mental health | Whole | PRO-measures on quality of life in mental health service users | Mental health service users | Not specified | Impact/ Evaluation | Yes |
| Gupta [38] | UK | Case study | Mental health | Dissemination | Case study of the development of dissemination materials on mental health research to the public | Mental health service users | Not specified | User-researcher interactions/ Benefits/ Challenges/ Dissemination/ Empowerment/ Low- and middle-income countries | No |
| *Hitchen [39] | UK | Service design | Mental health | Whole (after topic selection) | Integrating user and carer views on implementation of self-directed support | Mental health service users, carers | Action Research | Professional talk/ Trust/ Legitimacy/ Empowerment/ Benefits/ Shared learning/ Safe spaces/ Remuneration | No |
| *Hoekstra [40] | USA | Qualitative | Neurology | Design, Analysis, Dissemination | Qualitative investigation of patients and researchers’ experiences participating in spinal cord research | Spinal cord injury patients | iKT | Dissemination/ Building knowledge together/ Researcher and participant reasons to PPIE/ Building relationships/ Valuing perspectives/ Role models | Yes |
| *Honey [41] | Australia | Evaluation | Mental health | Whole | Evaluation of a consumer-led evaluation of a mental health program | Prior mental health patients | Collaborative auto-ethnography | Reflexivity and its impact on partnerships/ Academics with history of mental illness | Yes |
| *Hutchinson [42] | UK | Qualitative | Mental health | Whole | Qualitative research on mental health users’ experiences being co-researchers in an IPA study | Mental health service users | PAR | Empowerment/ Transformation/ Impact: personal/ Reframing a narrative/ User-researchers | No |
| *Jewell [43] | UK | Register study | Mental health | Predete-mined project areas | Evaluation of a service user and carer advisory group for mental health data linkage research | Mental service users | GRIPP | Advisory boards as point of contact for researchers/ Researcher behavior/ Impact: projects, researchers/ Training | No |
| *Jørgensen [6] | Denmark | Service design | Oncology | Whole | Evaluation of PPIE in a project focusing on empowerment and development of PRO.measures | Patients with cancer | GRIPP2 | Discussion of methods and practice/ Views and experiences of researchers and patients from the study/ Type of patients involved/ Local context | No |
| Kara [44] | UK | Review | Mental health | Whole | Coproduced literature search and evaluation of a mental health carers research reference group | Carers of mental health service users | Participatory evaluation | PR-lead research/ Advisory groups in research/ Impact: projects/ Organizational space for advisory groups/ Benefits | No |
| *Kearns [45] | UK | Survey | Neurology | Design | Development of a questionnaire for future use in aphasia rehabilitation | People with aphasia | INVOVLE | Group dynamics/ Experiences/ Development of discussions/ Goals/ Researcher self-reflection | No |
| Lammons [46] | UK | RCT | Pediatrics | Design | Evaluation of PPI in first phase of an RCT study on preterm nutritional care | Former neonatal intensive care patients and parents | Not specified | PR view on RCT process/ Legitimacy from emotions/ Researcher hesitations | No |
| Leese [47] | Canada | Qualitative | Rheumatology | Whole over several projects | Co-produced study on PRs experience of PR-researcher relationships in health research | Patients with arthritis | Not specified | Patient experience/ Being heard/ Legitimacy/ Co-building social relations/ Hard work for both parties/ Ethics/ PR-led research | Yes |
| Liabo [48] | UK | Qualitative | Various | Whole over several projects | Qualitative co-produced self-evaluation of three public involvement health research groups | Patients, carers, members of public involvement groups | Not specified | Values in practice/ Principles of involvement in practice/ Challenges | Yes |
| Lincoln [49] | USA | Qualitative | Mental health | Whole | Qualitative interview study of needs when transitioning from child to adulthood with mental health issues | Young adults with a history of mental illness | CBPR | Training/ Relationships/ Impact: project/ Remuneration/ Giving voice to underrepresented groups | No |
| *Lindblom [11] | Sweden | Qualitative | Rehabilitation | Design | Co-design of person-centered transition from hospital to home | Patients with stroke and relatives | Arnstein’s ladder/Human-centered approach | Roles and power/ Shared understanding/ Participation via interaction/ Flexibility/ Types of researchers | No |
| Locock [50] | UK | Qualitative | Mental health | Analysis | Evaluation of PR involvement in analysis of qualitative interview study on quality improvement | Mental health service users and stroke patients | Not specified | Empowerment/ Impact: researchers, PRs, project/ Training | Yes |
| *Marks [3] | UK | Mixed methods | Nephrology | Whole (after topic selection) | Personal reflection on participation in a patient experience improvement study in the renal field | A patient with a renal condition | GRIPP2/ INVOLVE | Difference between advisory group and co-researcher/ Reflections on different stages of research cycle/ Role as co-researcher | Yes |
| *Melchior [51] | Nether-lands | Qualitative | Palliative care | Whole | Qualitative study on PPIE processes in 10 studies | Patients, caregivers not further specified | PAR | Participation cultures: Relationship, task and control/ Impacts of culture/ Relationships | Not clear |
| *Miah [1] | Europe | Mixed methods | Dementia Research | Whole | Qualitative evaluation of PPIE impact in a multi-site dementia research program | People with dementia and their carers | GRIPP 2 | Impact: project, PRs, researchers, personal/ Training/ Resources/ Multi-national project | No |
| Minouge [2] | UK | Service design | Health Services | Whole | Development of a training package for PPIE in health research | Not specified | Not specified | PR-led research/ Experiential knowledge/ Partnership dynamics/ Structural changes | No |
| Mjøsund [52] | Norway | Qualitative | Mental health | Whole | Description and evaluation of analysis methodology in a mental health promotion project | Mental health service users or their carers | Not specified | PR improves quality of research/ Role of PR-team/ Using interpretive phenomenological analysis/ Power of multiple perspectives/ Skills | Yes |
| Mockford [5] | UK | Qualitative | Dementia Research | Whole | Development of service user-led recommendations around discharge from acute care to community care | Patients with Alzheimer | Not specified | Structural changes/ Organizational culture/ Training/ Remuneration/ Motivation | Yes |
| *Nichols [53] | UK | Feasibility study | Neurology | Whole | Chronic headache management—Evaluation of a self-management program development | Patients with chronic headaches | GRIPP2 | PPIE in whole process/ Equality/ Using skills for right tasks/ Roles/ Rules of engagement/ Building relationship/ Remuneration | No |
| *Nierse [10] | Nether-lands | Agenda setting | Nephrology | Agenda | Research agenda setting with patients in a patient organization | Patients with chronic kidney disease | Responsive methodology | Group dynamics/ Dialogue/ Researchers as facilitators/ Empowerment / Building bridges between science and society | Yes |
| *Nissen [9] | Denmark | Feasibility study | Oncology | Predetermined project areas | Cancer rehabilitation—a feasibility study of a psychosocial mindfulness intervention | Patients with breast and prostate cancer | INVOLVE | Impact on project/Structural organization of PPIE / Challenges | No |
| Noyes [54] | UK | Service design | Health Services | Whole | Report co-productive strategies for a qualitative evaluation of a new soft opt-out system on organ donation | Family members of deceased donors | Not specified | Outcomes: preset measures/ PPIE as response to methodological challenges/ Vulnerable groups | Yes |
| *Nöstlinger [55] | Nether-lands | Prevalence study | Epidemiology | Whole | Epidemiological study testing the prevalence of HIV amongst immigrants | People living with HIV | CBPR | Partnerships/Team leadership/PR training as researchers/Ways of contributing | No |
| Olding [56] | Canada | Survey | Substance abuse | Design | Co-development of a patient-reported experience questionnaire for people who use drugs | Drug users | Not specified | Graphic facilitation/ Identifying unmet needs/ Ethical considerations/ Remuneration | No |
| *Ostrach [57] | USA | Qualitative | Health services | Design | Evaluation of the process of the development outpatient women’s health screening tools | At risk women | Human-Centered Design | Timing and trust/ Historical mistrust/ Relationships/PR perspective | No |
| *Pallesen [58] | Ireland | Intervention | Health Services | Design | Stakeholder evaluation of co-designing a leadership intervention to health care teams | Not specified | Experience based Co-design | Sharing experiences/ Legitimacy/ Relationships/ Feedback/ Sharing power/ Storytelling | No |
| Pinfold [59] | UK | Service design | Mental health | Proposal, Analysis, Dissemi-nation | Evaluation of a study on personalization in mental health policy | People with mental health problems | Not specified | Team building/ Lack of remuneration and training had impact on involvement level/ Inequalities/ Lived vs research experience | Yes |
| *Pomey [4] | Canada | HTA | Cardiology | Design | Evaluation of a project creating recommendations for cardiac defibrillator replacement | Patients with cardiac defibrillators | Own | Value of PPIE/ PPIE in literature review/ Co-construction of results/ Impact: researchers and project/ Challenges | Yes |
| *Rayment [60] | UK | RCT | Pediatrics | Design | Pilot trial examining the effects of probiotics during pregnancy and risk of preterm birth | Mothers from populations at risk of preterm birth | Nominal group technique for discussion groups | Discussion groups/ Advisory team throughout the RCT/ Impact: project/ Process tailored to the needs of PRs | No |
| Ruff [61] | USA | Survey | Health Services | Design, Implemen-tation | Designing and implementing a survey on mental needs of children in foster care transitioning into adulthood | Young adults with a background on foster care | CBPR | Building relationships/ Vulnerable groups/ PR consultants as bridge to target group/ Limitations/ Agency | No |
| *Seeralan [62] | Germany | RCT | Mental health | Design | Development of patient-targeted feedback intervention in primary practice | Patients with experience of depression | INVOLVE | PR-led workshops/ Importance of structure and researcher skills/ Impact: project/ Remuneration | No |
| *Sharmil [63] | Australia | Qualitative | Minority health | Whole | Aboriginal health research related to consumption of drugs and alcohol to improve health service delivery | Aboriginals at risk of substance abuse | PAR combined with aboriginal traditions | Researcher and PR joined forces/ Researcher learnings from subject population/ Adjusting research process to subject needs/ Incorporate PR knowledge | Yes |
| *Simpson [64] | UK | HTA | Health Services | Whole | Creation of an early awareness and alert system and related webpage | Not specified | INVOLVE | MedTech involvement/ Impact: product/ Various methods in one project/ Social Media/ Challenges/ Knowledge sharing | No |
| *Skovlund [8] | Denmark | Intervention | Oncology | Whole | Clinical controlled intervention trial on effects of using PRO before metastatic melanoma consultations | Patients with or with history of melanoma | INVOLVE | Focus on analysis/ Training/ Structural and emotional challenges/ Remuneration/ Building relationships/ Skills | Yes |
| Springs [65] | USA | Review | Health services | Whole | Evidence synthesis on integrating arts-based interventions in health care | Various patients, artists | PCORI | Dissemination/ Training helps legitimacy/ Confidence | Yes |
| Stocker [66] | UK | Qualitative | Health services | Analysis | Critical reflection on collaborative data analysis in a care home-study | Relatives of care home residents | Not specified | Multiple professions/ Role play/ Steering choices/ Lack of practical guidance/ PR Interest group | No |
| Thomas [67] | UK | Qualitative | Mental health | Whole | Mental health research—a reflection on a study exploring deprivation as a trigger for mental stress | People at risk of developing mental health issues | Not specified | Lack of equality/ Importance of socializing/ Power dynamics/ Trust/ Relational work/ Underserved communities | Yes |
| Tremblay [68] | Canada | Qualitative | Minority health | Whole | Evaluation of developing a design for including indigenous patients in research partnerships | Indigenous Canadian tribes | Not specified | Training/ PPI as validation of results/ Recruitment/ Trusting relationships/ Capacity building/ Historical context | Yes |
| *Vat [69] | Canada | Evaluation | Several areas | Whole, several projects | Co-designing an evaluation of 11 projects with PPIE | Not specified | Several local patient and public evaluation tool kit | Human resources needed from both parties/ Tokenism/ Learning as legitimacy/ Integrating experiential knowledge | Yes |
| *Vogsen [7] | Denmark | Clinical trial | Oncology | Design, Analysis, Dissemi-nation | Evaluation of PPIE impact on retention and recruitment in a clinical trial | Women with prior breast cancer | GRIPP2 | Researcher hesitation/ Involvement in Patient-related activities/Involvement increased over time/Dissemination impact in community | Yes |
| *Worsley [70] | UK | Health services | Mental health | Proposal | Development of a public-led research proposal on improving quality of therapeutic relations | Users of mental health services | James Lind Alliance | Writing grant applications/ Validating lived experience/ Remuneration/ Equality and respect/ Marginalization within the group/ Structural issues | Yes |
BAME = Black, Asian and Minority Ethnics, RCT = Randomized Controlled Trial, HTA = Health Technology Assessment, PPIE Patient and Public Involvement and Engagement, GRIPP2 = Guidance for Reporting Involvement of Patients and the public, PRO = Patient Reported Outcomes, PR = Patient or Relative, CBPR = Community-based Participatory Research, COPD = Chronic Obstructive Pulmonary Disease, PAR = Participatory Action Research, iKT = integrated Knowledge Translation, PCORI = Patient-Centered Outcomes Research Institute. * = Part of narrative analysis in Involvement Matrix (by reference number) and metasynthesis. Note: Barn 2021 and Nichols 2021 are not represented in Matrix, as these articles did not describe roles