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Table 1 Study characteristics [19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59]

From: The experience of patient partners in research: a qualitative systematic review and thematic synthesis

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.

  1. PP patient-partner, F female, M male