Table 4 Patient characteristics and partnering activities

Absolom 2015 [45]

Heterogeneous cancers - including gastro-intestinal, breast, prostate, and gynecological

n/r

Patients on active treatment for cancer.

Collaborate

Grant writing; proposal development; research design; recruitment strategy development; tool refinement; implementation & dissemination. 2 patients on the steering committee (SC) which oversaw and advised the study.

Arain 2015

[46]

Heterogeneous cancers

“diversity”

Patients on treatment for cancer type; including colorectal, breast, lung, brain and prostate.

Collaborate

Grant writing; proposal development; research design; tool refinement (patient information sheets for clinical trials, questionnaires); advice for increasing trial recruitment, conducting patient interviews. Patients also sat on project team.

Bates 2018

[47]

Heterogeneous cancers

n/r

Patients receiving palliative care for advanced cancer.

Collaborate

Engaged in data collection and data analysis, dissemination activities.

Bethell 2018 [48]

Dementia

n/r

Different types/stages of dementia – varying degrees of cognitive impairment.

Collaborate

Identification and prioritization of research questions. 1 person with dementia included on the steering committee which oversaw and advised the study. Persons with dementia were involved in: promoting surveys and recruitment.

Bethell 2019 [49]

Older Adults with Frailty

n/r

Those with lived experience of frailty.

Collaborate

Identification of research priorities. People with lived experience of frailty included on steering committee which oversaw and advised the study.

Burns 2018

[50]

Hematological malignancies

n/r

Patients who have undergone hematopoietic cell transplant.

Collaborate

Identified research priorities. Provided advice on patient engagement. Patients also participated on SC and working groups throughout the entire research cycle (details and outcomes of contribution provided).

Caldon 2010 [51]

Breast cancer

n/r

Patients with cancer. One patient partner died prior to publication of the study.

Collaborate

Co-development of the project – tools, documentation, and processes. Also involved in dissemination and co-authorship.

Chiu 2013

[7]

Breast cancer

n/r

Some participants on active treatment.

Collaborate

Provided input through all phases of the research from grant development to dissemination of study findings. Other activities included refinement of research questions, survey development, data analysis, presentations, and co-authorship.

Collins 2015 [24]

Heterogeneous cancers & palliative

n/r

Level of acuity not documented in cancer patients but includes palliative patients

Collaborate

Co-researchers across different projects from influencing the research agenda through to dissemination as co-authors and presenters at conferences.

Corner 2007 [52]

Heterogeneous cancers (including breast, gastrointestinal, lung, hematological, etc.) & palliative

n/r

16% on active treatment;

13% receiving palliative care.

Inclusion of other stakeholders, e.g., caregivers, ex-patients (cancer survivors).

Patients were excluded if deemed by clinical team to be too unwell, have complicating health factors or liable to be distressed by participating.

Collaborate

Identification of research priorities. The co-researchers ‘co-owned’ the study with the unit, and as such had a direct influence on all aspects of the study, including data collection, analysis and dissemination of study findings.

Cotterell 2011 [53]

Heterogeneous cancers, COPD, Stills Disease, Parkinson’s Disease

“diversity”

Patients receiving active treatment and patients receiving palliative care (for non-malignancies).

Inclusion of other stakeholders, e.g., caregivers, ex-patients (cancer survivors)

Collaborate

Involved as integral members of the research team throughout the length of the study; data collection, analysis and dissemination of study findings.

Davis 2019

[54]

Frail older adults

Pakistani, Somalian, Yemeni

Frail older adults.

Collaborate

Identification of research topics. Provided advice on methods of patient engagement to develop sustainable infrastructure. Developed a PPI structure. Patients/caregivers included on steering committee.

Froggatt 2015 [55]

Heterogeneous cancers

n/r

Patients experiencing recurrence of disease and those receiving ongoing treatment

Collaborate

Research partners across different studies in cancer research collaborative. Provided input regarding barriers to patient engagement. The term research partner was proposed by the co-applicant patient representative on the management group as reflecting the nature of the PPI working that was to be developed in the collaborative

Heaven 2016 [56]

Frailty

n/r

Older adults with frailty.

Collaborate

Engaged throughout a number of studies from grant writing/proposal development, research conduct, dissemination. Participation on research steering/advisory committees.

Iwata 2019

[57]

Head and neck cancers

10% Asian, Hispanic or Latino

Included patients on active treatment.

Inclusion of other stakeholders, e.g., caregivers, ex-patients (cancer survivors).

Collaborate

Engaged in identification of research priorities, hypothesis generation, feedback on tools and processes, clinical flow and dissemination.

Jones 2017

[58]

Kidney cancer

n/r

Included patients on current active treatment and those awaiting surgical treatment.

Collaborate

Identifying and prioritizing research questions. 7 Patients/caregivers included on steering committee; contributed throughout study design and execution; defining the scope of the partnership, development of the protocol, identifying potential partners and stakeholders, and oversight of the process.

Jorgensen 2018

[59]

Heterogeneous cancers

n/r

Included patients on active treatment.

Inclusion of other stakeholders, e.g., a caregiver, ex-patients (cancer survivors).

Collaborate

Engaged throughout research cycle: co-application on grants, literature review participation, outcome and tool development, feedback on the conduct of the research, presentations, co-authorship.

Jorgensen 2018

[60]

Heterogeneous cancers

n/r

Included peer interviewer with advanced age and stage of illness.

Co-researchers also included caregivers, ex-patients (cancer survivors).

Collaborate

Involved in study design, conduct of research (conducting peer interviews), data analysis.

Lechelt 2018 [61]

Head and neck cancers

n/r

Broad spectrum of patients, varying tumor types and sites, including newly diagnosed, those on current active treatment.

Inclusion of other stakeholders, e.g., caregivers, ex-patients (cancer survivors).

Collaborate

Identification of research priorities. 5 patients on the steering committee which established consensus on desired scope and inclusion/exclusion criteria for the project regarding: respondent groups, question categories; tumor types/site; developed the survey; oversaw all aspects of the project.

Litherland 2018 [62]

Dementia

n/r

Different types/stages of dementia – varying degrees of cognitive impairment.

Collaborate

Engaged in shaping project materials, providing feedback on questionnaires and interview processes, reviewing emerging theoretical themes, and presenting project findings.

Littlechild 2015 [63]

Dementia

“diversity”

Older persons with varying types/stages of dementia – varying degrees of cognitive impairment.

Collaborate

Engaged at all stages of the study, including: designing the research method and tools, identifying key themes and findings at the analysis stage, dissemination activities.

Parveen 2018 [64]

Dementia

n/r

Different types/stages of dementia – varying degrees of cognitive impairment

Collaborate

Engaged in discussing study progress, findings and interpretation of data

Perkins 2008 [65]

Heterogeneous cancers

n/r

Included palliative patients with a prognosis of 6 months or less.

Involve

Patient input into identification of research domains, piloting of questionnaires prior to prioritization of research questions.

Piil 2019

[66]

Primary malignant brain tumor and acute leukemia

n/r

Life threatening cancer diagnosis, characterized by poor and uncertain prognosis, undergoing aggressive and intensive oncological treatments resulting in a complex symptom burden.

Collaborate

Identifying and prioritizing research questions. Patients included on steering committee and contributed throughout study design & execution; defining scope of the partnership, development of the protocol, identifying potential partners and stakeholders, and oversight of the process. Additional details included in published study protocol [73].

Schölvinck 2019 [67]

Hematological malignancies

n/r

Patients from all disease phases and types.

Collaborate

Identification and prioritization of research questions and outcomes. Patient representatives included on the research steering/advisory committee.

Stephens 2015 [68]

Mesothelioma

n/r

Patients with high symptom burden.

Collaborate

Identification and prioritization of research questions. Patients sat on the research advisory committee which oversaw and advised the study. .

Stevenson 2019 [69]

Dementia

n/r

Cognitive impairment - early to mid-stage dementia.

Involve

Engaged in deriving meaning from the data, identifying and connecting themes.

Tanner 2012

[70]

Dementia

n/r

Cognitive impairment – progressive during the study.

Involve

Engaged as co-researchers involved in conducting interviews.

Wright 2006

[71]

Heterogeneous cancers

n/r

Includes patients undergoing treatment.

Inclusion of other stakeholders, e.g., caregivers, ex-patients (cancer survivors).

Involve

Engaged in the design and conduct of the study (including co-facilitation of focus groups). Also engaged in subsequent data analysis and dissemination activities.

Wright 2006

[72]

Disease/s not specified (palliative)

n/r

Patients receiving palliative care.

Collaborate

Engaged in the design and conduct of the study. Co-research role throughout the course of the study.

Totals: n (%)