Author, Date, Country | Aims relevant to this review (from text) | Design and sample | Demographics | Specific population | Main PPI activities |
---|---|---|---|---|---|
Ashcroft, 2016, United Kingdom [37] | To explore how patients and carers in eight diagnostic research specialties have been involved in research, their motivations, and the impact involvement had on them | Mixed methods with convenience sample and online semi-structured questionnaire | 143 PP 77 F, 53 M Age 55-64 | – | Varied between participants |
Awenat, 2018, United Kingdom [38] | To investigate the ex-offender service user consultants’ experiences of being involved in the research | Qualitative case study | 4 PP 2 F, 2 M Age 40-60 | Ex-offenders with experience of suicidal thoughts in prison | Monthly research meetings to guide the research team |
Bayliss, 2016, United Kingdom [44] | To inform the evidence base on effective ways of involving patients in a qualitative meta-synthesis. | Qualitative case study | 6 PP 6 F, 0 M | Patients of rheumatoid arthritis from across Europe | Realisation of a meta-synthesis of qualitative studies |
Beighton, 2019, United Kingdom [22] | To explore the perspectives and experiences of adults with intellectual disabilities and parent carers of their public and participant involvement in a health research study | Qualitative case study | 9 PP (4 carers, 5 adults with intellectual disabilities) Carers: 4 F, 0 M Adults with intellectual disabilities: 2 F, 3 H Adults with intellectual disabilities: age 27-40 | Adults with intellectual disabilities and parent carers | 6 meetings per year: inform the choice of process and outcome measures, develop ideas for further explanatory analysis, interpret the findings of the study, disseminate results |
Bench, 2020, United Kingdom [41] | To explore former patients’ and family members’ views and experiences of involvement in critical care research and/or quality improvement | Qualitative with purposive recruitment | 10 PP 4 F, 6 M Age 39-78 | People with lived experience of critical illness and admission to the ICU (patients and family) | Varied between participants |
Bhati, 2020, Canada [48] | To report on the findings of the PERC evaluation (of patients’ experience of engagement in research) | Mixed methods with patient-partners from 3 studies in the INSPIRE-PHC | 5 PP Age 60-80 | – | Varied between participants |
Bindels, 2014, Netherlands [39] | To investigate the required conditions, success factors, and pitfalls in potential collaborations between professional researchers and older people acting as co-researchers | Qualitative case study | 3 PP 0 F, 3 M Age 60-65 | Older people | Co-execution of the research project: preparing interview questions, conducting interviews, analysing the data. |
Black, 2018, Canada [55] | To explore the perspectives of patients, family members, and informal caregivers who have been involved on health care research teams in Canada and elicit their recommendations for meaningful engagement | Qualitative with convenience sample | 19 PP 10 F, 9 M Age 19-85 | – | Varied between participants |
Carlsson, 2020, Sweden [28] | To explore how persons with lived experience of a prenatal diagnosis perceived collaborating in a research project | Qualitative case study | 9 PP 5 F, 4 M Age 23-43 | People with experience of a prenatal diagnosis of congenital heart defect in the fetus | Regular consultative meetings |
Charron, 2018, Canada [27] | To assess the community researchers’ experiences with spirometry training and their overall experiences participating in a [community-based participatory action research] project | Mixed methods case study | 2 PP | Tobacco and poly-substance users, who were homeless or at-risk for homelessness | Co-execution of the research project: conception of the research question, designing questionnaires, and knowledge creation, translation, and mobilization |
Coupland, 2005, Australia [29] | To explore the benefits and challenges associated with peer workers and health workers collaborating in research | Qualitative case study | 4 PP Age 16-25 | Young injecting drug users | Data collection: fieldwork, interviews, facilitation of focus groups. Input on the data analysis. |
Damon, 2017, Canada [31] | To add to the research literature on [community-based participatory research] by drawing on the expertise of community-based ‘peer researchers’ with CBPR experience who live in the Downtown Eastside. | Qualitative with peer researchers involved in studies identified by VANDU's board of directors | 14 PP 7 F, 6 M, 1 transgender Age 37-58 | People who use(d) drugs | Varied between participants: participatory research. |
Di Lorito, 2020, United Kingdom [25] | To propose a model for good practice in co-researching with carers of people with dementia, by reporting and synthesizing the personal reflections of the academic and lay researchers | Qualitative, case study, personal diaries, team discussion of the data | 2 PP 1 F, 1 M | Carers of people with dementia | Co-execution of the research project: designing the study protocol, developing the topic guide, collecting and analysing data, and disseminating research findings |
Froggatt, 2015, United Kingdom [43] | To describe the experience of PPI participation in palliative care research following a cancer diagnosis. | Qualitative with research partner representatives who had been involved in CECo research activities | 8 PP 7 F, 1 M Age 57-84 | Individuals with experience of a cancer diagnosis | Varied between participants |
Garfield, 2015, United Kingdom [42] | To describe our experiences of lay involvement in conducting research, from both the lay observers’ and researchers’ perspectives, to inform the future role of lay people in carrying out health services research | Qualitative case study | 3 PP Age over 55 | – | Data collection: fieldwork |
Giebel, 2019, United Kingdom [50] | To assess the extent of public involvement and explore the experiences of public advisers in the dissemination of the HHS | Qualitative case study | 5 PP 3 F, 2 M | – | Writing groups (analysis and dissemination of results) and a public dissemination event |
Hamilton, 2018, Canada [26] | To develop a conceptual framework for meaningful PEIR from a patient perspective | Qualitative with purposive sampling | 18 PP 17 F, 1 M Age 26-68 | Patients with arthritis | Varied between participants |
Harding, 2010, United Kingdom [54] | To explore service users’ experiences of their involvement in developing NICE guidelines. | Qualitative with user representatives from completed or ongoing mental health GDGs | 10 PP 5 F, 5M | Mental health services users | Developing NICE guidelines in mental health guideline development groups |
Harrison, 2015, United Kingdom [34] | To explore the experiences of patients and carers involved in patient and public involvement (PPI) activities for stroke research. | Qualitative with purposive sampling | 11 PP 6 F, 5 M Age 59-85 | Stroke survivors and their carers | Varied between participants |
Hemphil, 2019, United States [58] | To understand what motivates patients and caregivers to engage as partners on PCORI-funded research projects and how such engagement changed their lives | Qualitative with patient-partners of PCORI-funded research projects | 255 PP 174 F, 62 M, 1 other gender, 18 missing genders Mean age 55 (SD of 14) | – | Varied between participants |
Hovén, 2020, Sweden [57] | To explore the experiences of patient research partners (PRPs) and researchers engaged in a co-creative long-term collaboration in cancer research. | Qualitative case study | 11 PP 7 F, 4 M Age 20-41 | Cancer patients and their significant others | Regular consultative half-day meetings |
Howe, 2010, United Kingdom [49] | To evaluate the efforts to ‘put principles into practice’ in public involvement research over 5 years in one specific project (PPIRes) | Mixed methods with volunteers of the PPIRes project | 24 questionnaire respondents 10 PP in focus groups Focus groups: 9 F, 1 M | – | Varied between participants |
Hutchinson, 2013, United Kingdom [40] | To discuss the process of working alongside people who use statutory mental health services as co-researchers | Qualitative case study | 6 PP 5 F, 1 M Number of PP in age groups: 1 30-40; 2 40-50; 1 50-60; 2 over 65. | People with severe or enduring mental health problems | Co-execution of the research project: interviews, data analysis, dissemination. |
Kim, 2005, South Korea [32] | To describe the experiences of researchers with a psychiatric disability | Qualitative case study | 4 PP | People with a psychiatric disability | Participation in survey design, collection of survey data, presentation of survey results |
Leese, 2018, Canada [20] | To examine benefits and risks in patient-partner–researcher relationships, based on patient partners’ experiences | Qualitative with convenience sample | 22 PP 21 F, 1 M Age 26-68 | People with inflammatory arthritis or osteo-arthritis | Varied between participants |
Mann, 2018, United Kingdom [52] | To contribute evidence towards understanding how and in what circumstances PPI makes a difference | Qualitative case study | 7 PP | People with multiple conditions (multimorbidity) and their carers | Regular meetings to advise on patient information leaflets, questionnaire design, ethical issues, recruitment approaches, dissemination of results |
Marks, 2018, United Kingdom [51] | To share one first-time co-researcher’s reflections on the impact of PPI within a mixed methods (non-clinical trial) renal research study. | Qualitative case study | 1 PP (F) | – | Commenting on and contributing to documents (protocol, interview guides, abstracts, presentations), analysis of interview data. |
Matheson, 2021, United Kingdom [53] | To explore whether and how patient participation in research may promote recovery from CPTSD. | Qualitative case study | 6 PP | Patients with complex post-traumatic stress disorder | Design, data collection (conducting interviews) and analysis. |
McGregor, 2011, United Kingdom [56] | To explore the experience of what it is like to be a user representative in the real world. | Qualitative with "heart patients who were current user representatives" | 12 PP | Heart patients | Varied between participants |
Musson, 2019, United Kingdom [33] | To understand the conduct and impact that PPI can have on MND research as well as barriers and enablers to PPI by exploring the experiences of members and those who work with the SMNDRAG. | Qualitative with purposive sampling | 10 PP Age 35-82 | People with experience of motor neuron disease (patients, carers, relatives) | Participation in the Sheffield Motor Neurone Disorders Research Advisory Group. |
Palmer, 2009, United Kingdom [23] | To discuss the process [of under-taking service user research] and to reflect on aspects of the project’s design and delivery. | Qualitative case study | 5 PP 5 F, 0 M Number of PP in age groups: 3 26-35, 1 35-50, 1 51-64 | Mental health services users | Co-execution of the research project: design, data collection (conducting interviews), analysis. |
Reynolds, 2020, United Kingdom [19] | To answer the questions: How do PPI contributors situate their experiences of public involvement in the context of their broader lives, over time, and how are meaning and identities constructed through narratives of these experiences | Qualitative with a blend of purposive and convenience sampling | 5 PP 3 F, 2 M Number of PP in age groups: 1 40-49, 2 50-59, 2 60-69 | – | Varied between participants: contributed to three or more health research studies in a PPI capacity in the past 10 years |
Saunders, 2016, United States [59] | To explore the experiences of AYAs and parent panel members regarding their roles as patient stakeholders in the core study | Mixed methods case study | 9 PP (6 adolescents and young adults (AYA), 3 parents) AYA: 4 F, 2 M, age 17-25 Parents: 3 F, 0 M, age 50-55 | Adolescents and young adults, and parents | Regular meetings in a stakeholder advisory group |
Schilling, 2019, Germany [47] | To elucidate the experiences of patients and researchers who were members of a patient board that was established for a clinical trial on urinary tract infections (UTI) | Qualitative case study | 7 PP 7 F, 0 M Number of PP in age groups: 2 20-34, 2 35-49, 3 50-64 | Women with experience of UTIs | Participation in regular consultative patient-board meetings to provide input on the trial. |
Sieck, 2017, United States [36] | To identify what both groups [researchers and patients] value about these approaches and how best to facilitate such partnerships | Qualitative with distribution of a survey to all PP of the PFEAP | 72 PP | – | Varied between participants |
Stuhlfaulth, 2019, Norway [30] | To investigate experiences and collaboration between patient representatives and researchers in user involvement in health research. | Qualitative with PP of the two Norwegian patient organizations | 14 PP | – | Varied between participants |
Thompson, 2014, United Kingdom [35] | To report on what motivated participants to get involved and their experiences of involvement in this setting | Qualitative with purposive sampling | 14 PP 10 F, 4 M Number of PP in age groups: 13 55-65, 1 over 65 | Cancer patients and carers | Varied between participants, each participant acting as an advisor on at least one research advisory group |
Tsang, 2020, United Kingdom [24] | To describe a novel method of organizing youth participation in research and to understand the benefits and barriers of this new model | Mixed methods case study | 16 PP 11 F, 5 M Age 13-25, average 19 | Youth | Co-executing the research: the creation of project protocols, questionnaire design, ethics applications, and project execution through the organization of focus groups |
Vanderlee, 2020, Canada [46] | To examine the experiences of researchers and parents of children with a neurodevelopmental condition who participated on a research study advisory committee | Qualitative with purposive sampling | 6 PP | Parents of children with a neurodevelopmental disability | Participation in a parent advisory committee |
Warner, 2021, Sweden [21] | To describe the immediate impact of PPI from the user representatives’ perspective in a case study of refugee involvement in the development of mental health intervention research. | Mixed methods case study | 4 PP | Refugees with experience of children experiencing post-traumatic stress | One‐day meeting for group discussion on the trial design |
Young, 2019, United States [45] | To examine the relationships that developed between investigators and patient-partners over 18 months. | Qualitative with PP of the VPPRN | 13 PP | PP related to the Vasculitis PPRN | Participation in the VPPRN governance. |