Table 3 Characteristics of included studies

Absolom 2015 [45]

UK

To provide an overview of how research collaborations with patient representatives have developed over time and how patient involvement has played a crucial role the success of local and national cancer research programs (eRapid study).

Qualitative; case study

14 patients on treatment, cancer survivors

2 additional patients on research S/C

Arain 2015 [46]

UK

To explore different ways of involving consumers in cancer research in one regional network.

Quantitative; descriptive

15 patients on treatment, ex-patients, cancer survivors, caregivers

Bates 2018 [47]

Malawi

To report on experiences and lessons learnt using Photovoice in Blantyre, Malawi to encourage its wider use in research and practice.

Qualitative; participatory action research (PAR)

6 patients with palliative care needs

Bethell 2018 [48]

Canada

To engage persons with dementia, friends, family, caregivers, and health and social care providers to identify and prioritize their questions for research related to living with dementia and prevention, diagnosis, and treatment of dementia.

Mixed methods; James Lind Alliance Research Priority Setting Partnership (PSP) methods

7 persons with dementia

1 additional person with dementia on research S/C

Bethell 2019 [49]

Canada

To engage people with lived or clinical experience of frailty and produce a list of research priorities related to care, support, and treatment of older adults living with frailty

Mixed methods; James Lind Alliance Research Priority Setting Partnership (PSP) methods

52 initial survey

6 interim prioritization

# n/r for research S/C participation

Burns 2018 [50]

US

To report outcomes of engaging patients and caregivers, identification of knowledge gaps, and prioritization of high impact research questions or recommendations related to hematopoietic cell transplantation.

Qualitative; focus groups

25 patients

Patients also served on steering committee & working groups

Caldon 2010 [51]

UK

To report on the process and consequences of consumer participation, rather than the findings of the illustrative (primary) research study

Qualitative; case study

2 patients

Chiu 2013 [7]

Canada

To share the experience of engaging cancer patients/survivors in a participatory research study.

Mixed methods; participatory action research (PAR)

18 patients on treatment, ex-patients, cancer survivors

Collins 2015 [24]

UK

To outline the challenges faced by the North Trent Cancer Research Network Consumer Research Panel model of Public & Patient Involvement.

Qualitative; case study

38 patients on treatment, ex-patients, cancer survivors

Corner 2007 [52]

UK

To involve cancer patients across the UK in identifying priorities for research investment.

Qualitative; participatory action research & nominal group study

130 patients on treatment, ex-patients/cancer survivors

Cotterell 2011 [53]

UK

To explore the personal impact of involvement on the lives of service users affected by cancer.

Qualitative; focus groups

64 patients on treatment, ex-patients/cancer survivors

Davis 2019 [54]

UK

To consult frail older adults about services improvements and research topics associated with the design and delivery of discharge from hospital. To use successive PPIE processes to enable a permanent PPIE panel to be established.

Qualitative; focus groups and interviews

27 frail older adults

Froggatt 2015 [55]

UK

To describe the experiences of people’s participation in patient and public involvement (PPI) in supportive and palliative care research.

Qualitative; semi-structured interviews

8 patients

1 patient on research S/C

Heaven 2016 [56]

UK

To create a structure to enable meaningful, sustainable public involvement within the cmRCT framework.

Qualitative; case study

70 frail older adults

Iwata 2019 [57]

US

To describe the benefits of patient-driven research in the field of head and neck oncology, review lessons learned from establishing partnerships with patients and caregivers and serve as a model for further patient-driven research endeavors.

Qualitative; case study

15 patients on treatment, ex-patients, cancer survivors

Jones 2017 [58]

Canada

To identify research priorities in the management of kidney cancer.

Mixed methods; James Lind Alliance Research Priority Setting Partnership (PSP) methods

34 patients on treatment:

34 waiting surgery:

7 on research S/C (conflated with caregivers)

Jorgensen 2018 [59]

Denmark

To report on the process of having current and former cancer patients involved as co-researchers.

Qualitative; case study

8 patients on treatment, ex-patients, cancer survivors

Jorgensen 2018 [60]

Denmark

To investigate the impact of involving patient representatives as peer interviewers in a research project on patient empowerment.

Mixed methods; qualitative & quantitative analyses

16 patients on treatment, ex-patients, cancer survivors

Lechelt 2018 [61]

Canada

To determine research priorities for patients with head and neck cancer.

Mixed methods (James Lind Alliance method for PSP)

104 patients on treatment, ex-patients, cancer survivors

5 patients on research S/C

Litherland 2018 [62]

UK

To describe the involvement of people with dementia and carers as part of the IDEAL study

Qualitative; case study

3 persons with dementia

Littlechild 2015 [63]

UK

To evaluate the impact of working with co-researchers from the perspective of multiple stakeholders on a project in which older people with dementia and older people from a black and minority ethnic community were involved as co-researchers.

Qualitative; case study

11 older persons with dementia and/or frailty

Parveen 2018 [64]

UK

To report the process of involving a diverse range of experts-by-experience approach within the Caregiving HOPE study, and its impact on research processes and outcomes.

Qualitative; case study

1 older person with dementia

Perkins 2008 [65]

UK

To determine patients’ priorities for palliative care research through a questionnaire study

Quantitative; survey

19 patients

10 patients piloted tool

Piil 2019 [66]

Denmark

To identify future research agendas that reflect the concerns and unexplored areas of interest for patients with life-threatening cancer, their relatives and the clinical specialists during the cancer trajectory.

Qualitative; focus groups

6 patients

2 patients on research S/C

Schölvinck 2019 [67]

The Netherlands

To identify and prioritize research needs of hematological cancer patients and people who have undergone a stem cell transplantation.

Mixed methods; focus groups, interviews, questionnaire

19 patients interviewed

27 patients in focus group

146 patients surveyed

3 patients on research S/C

Stephens 2015 [68]

UK

To identify top 10 research priorities relating to mesothelioma, and identify those unanswered questions that involved an intervention, in order to aid translation into answerable research questions.

Mixed methods; James Lind Alliance Research Priority Setting Partnership (PSP) methods

168 patients surveyed

6 patients at consensus meeting

Stevenson 2019 [69]

UK

To involve individuals with dementia as co-researchers in analysis of research findings to enhance validity through a process of applying multiple perspectives to data analysis.

Qualitative; case study

4 persons with dementia

Tanner 2012 [70]

UK

To report on the process of involving older people with dementia in all stages of the research process.

Qualitative; case study

3 persons with dementia

Wright 2006 [71]

UK

To provide detail of collaborative participation of patients and carers in the design and conduct of participatory research study in setting the cancer research agenda.

Qualitative; participatory approach

22 patients & caregivers

Wright 2006 [72]

UK

To describe the experiences of involving palliative care patients as co-researchers in end of life research.

Qualitative; case study

15 patients