. 2023 Dec 23;6(2Part B):485–502. doi: 10.1016/j.cjco.2023.12.016

Table 1.

Included studies, patient partner and/or community demographics and engagement details by region

Author(s) (Year) Location	Sample size Method	Biological sex (female), n (%)	Age, y; mean (SD)	Race and/or ethnicity, n (%)	Gender, n (%)	Primary diagnosis	Research phase of engagement	Level of engagement
Canada
Blumer et al.⁶⁹ (2021) Ontario, Canada	NR Stepped wedge cluster RCT	NR	NR	NR	NR	HF	Design/Planning	Inform (PROMs)
Cho et al.⁷⁰ (2019) British Columbia, Canada	Patients, partners and family members formed the PPC (n = 6) Mixed methods	2 (33)	NR	NR	NR	Premature atherosclerotic CVD	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Collaborate Collaborate
Etowa et al.⁷⁴ (2007) Nova Scotia, Canada	Black community leaders and community research facilitators (n = 3) Interviews	3 (100)	NR	African Canadian	NR	Heart disease, cerebrovascular disease	Design/planning Empirical Analytic Dissemination	Involve Collaborate Collaborate Empower
Ghisi et al.⁷⁵ (2022) Canada, USA, Bangladesh	Patient partners on writing panel (n = 2) Survey	2 (100)	Patient partner ages: 74 and 82 y	NR	One patient partner had lower education level and one patient partner had higher education level	CVD	Analytic Dissemination	Collaborate Involve
Parry et al.⁶² (2020) Ontario, Canada	Patient Advisory Committee (n = 7) Protocol for a mixed methods study	7 (100)	NR	NR	NR	Coronary artery disease	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Collaborate Collaborate
Teed et al.⁶³ (2021) Canada	Participants in cross-Canada tour (n = 204) Participants in collaboration sessions (n = 57) Focus groups, interviews, workshop	261 (100)	NR	Efforts made to have representation from Indigenous women living in Northern communities and those of South and East Asian descent	NR	Heart disease and stroke	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Involve Involve Involve
Wilson et al.⁹⁸ (2023) Alberta, Canada	Patient partners (n = 2) Survey	2	NR	NR	NR	Acute coronary syndrome	Design/Planning Empirical Dissemination	Collaborate Collaborate Collaborate
United Kingdom
Benn et al.⁶⁷ (2022) Manchester, UK	Stroke survivors (n = 2) Interviews	NR	NR	NR	NR	Stroke	Conceptual Design/Planning Empirical Analytic Dissemination	Involve Collaborate Collaborate Collaborate Collaborate
Jalal et al.⁸⁰ (2020) UK	n = 9 Focus groups	5 (56)	NR	NR	Two of the patient partners were carers^∗	MI	Design/Planning Analytic Dissemination	Collaborate Involve Unclear
Johnson et al.⁸² (2022) Cambridge, UK	Three stroke survivor groups consisting of 4-8 participants per group (including carers) (n = 18) Workshops	NR	NR	White	NR	Stroke	Conceptual Design/Planning	Consult Consult
Kilbride et al.⁸⁵ (2018) London, UK	Stroke survivors (n = 20) Protocol for a nonrandomized intervention	NR	NR	NR	NR	Stroke	Design/Planning Dissemination	Involve Involve
Porter et al.⁹² (2016) UK	A group of patients were recruited, actual number NR Survey, interviews	NR	NR	NR	NR	Comorbidities include asthma, COPD, diabetes, HF, depression, and hip/knee osteoarthritis	Design/Planning	Involve
Williamson et al.⁹⁷ (2015) Manchester, UK	Lay advisors (n = 10) Interviews	6 (60)	40 – 75 y^∗	NR	NR	Stroke	Design/Planning Empirical Analytic Dissemination	Involve Collaborate Involve Consult
USA
Bess et al.⁶⁸ (2019) North Carolina, USA	Executive directors from community organizations (n = 2) Focus groups (n = 8) Semi-structured individual interviews (n = 48) Focus groups, interviews, surveys	32 (68.1)^‡	21–30 y: n = 5 (10.6%) 31–45 y: n = 6 (12.8%) 46–60 y: n = 19 (40.4%) > 61 y: n = 17 (36.2%)	African American: 47 (100)	Married / partnered: 19 (40) Not married / widowed: 28 (60)	CVD	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Collaborate Collaborate
Crabbe et al.⁷¹ (2021) Philadelphia, USA	Town hall #1 (n = 11) Town hall #2 (n = 41) 5 focus groups, 1 Twitter event, 2 Facebook live events, survey	Survey: (100)^†	Survey: 35–50 y (17%)^† 51–60 y (33%)^† 61–70 y (22%)^† > 71 y (28%)^†	Survey: African American (100)^†	Survey: Income > $50,000 (82)^† Income > $80,000 (41)^†	CVD	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Collaborate Collaborate
Dickson et al.⁷² (2015) USA	NR Protocol for a staggered RCT	NR	NR	NR	NR	HF	Conceptual Design/Planning Empirical	Collaborate Collaborate Collaborate
Dodgen et al.⁷³ (2020) Texas, US	Community members (n = 6) Interviews	6 (100)	25– 60 y	African American, Hispanic, White^†	Patient partners on the advisory committee consisted of women at various life stages (eg, young mothers, early to mid-career, professionals, and retirement)	Chronic diseases including heart disease, cancer, and diabetes	Conceptual Design/Planning Dissemination	Inform Collaborate Collaborate
Gleason-Comstock et al.⁷⁶ (2022) Michigan, USA	No. of patient partners on the Community Advisory Committee (n = 12) Pre-post test	6 (50)	NR	African American	Patient partners had LGBTQ+ representation, but this was not clearly defined	Heart disease	Design/planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Collaborate
Heo et al.⁷⁷ (2015) USA	n = 4 Interviews Pre-post test	2 (50)	NR	White female: 1 (25) White male: 1 (25) African American female: 1 (25) African American male: 1 (25)	NR	HF	Design/Planning	Consult
Inam et al.⁷⁹ (2021) Texas, USA	NR Survey	NR	NR	NR	NR	Acute ischemic stroke	Design/Planning	Consult
Jankowska et al.⁸¹ (2023) Americas, Asia-Pacific, Europe, and Central Asia	Patient survey (n = 98) 3 patient partners on the working group	Survey: 60 (61.2)	35–44 y: n = 13 (13.3%)^∗ 45–54 y: n = 20 (20.4%)^∗ 55–64 y: n = 30 (30.6%)^∗ 65–74 y: n = 25 (25.5%)^∗ ≥ 75 y: n = 10 (10.2%)^∗	Americas: 25 (25.5)^∗ Asia Pacific: 24 (24.5)^∗ Europe and Central Asia: 49 (50)^∗	NR	HF	Design/Planning Empirical Analytic Dissemination	Involve Involve Involve
Jones et al.⁸³ (2022) USA	C-RAB working group members (n = 5) Health fairs, workshops	5 (100)	> 40 y	Black: 5 (100)	Four primary sources of stress: workplace, parenting, finances, and social media. Gendered racism and discrimination and life imbalance emerged as underlying stressors.	CVD and stroke	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Unclear Collaborate
Kandula et al.⁸⁴ (2015) Illinois, USA	Community partner (Metropolitan Asian Family Services) (n = 1) RCT	NR	NR	South Asian	NR	Heart disease	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Unclear Unclear
Kronish et al.⁸⁷ (2014) New York, USA	Stroke survivors (community-based PAR) (n = 39) RCT	NR	NR	NR	NR	Stroke	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Collaborate Collaborate
Menkin et al.⁹⁰ (2019) Los-Angeles, USA	n = 8 Randomized wait-list controlled trial	7 (88)	NR	Black: 2 (25) Latino: 1 (12.5) Chinese American: 1 (12.5) Korean American: 4 (50)^∗	NR	Stroke	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Collaborate Collaborate
Prabhakaran, et al.⁹³ (2020) Illinois, USA	NR Community members and stroke survivors with CG on a CAB, stakeholders for recruitment Focus groups	NR	NR	NR	NR	Ischemic stroke	Conceptual Design/Planning Empirical Dissemination	Involve Involve Collaborate Involve
Robles et al.⁹⁴ (2021) Michigan, USA	Interviews (n = 15) Community members who engaged as partners (NR) Interviews	NR	NR	NR	NR	Acute stroke and MI	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Collaborate Collaborate
Schwertfeger et al.⁹⁵ (2024) USA	Stroke camps led by PWS, CG, music therapist, and nurse but no. for PWS and CG (NR) Survey	NR	NR	NR	NR	Stroke	Conceptual Design/Planning Empirical Dissemination	Consult Consult Collaborate Collaborate
Skolarus et al.⁹⁶ (2013) Michigan, USA	One faith-based community organization was the community partner, incorporating 3 African American churches Focus groups	NR	NR	African American: (100)	NR	Stroke	Conceptual Design/Planning Empirical Analytic	Collaborate Empower Collaborate Collaborate
Other
Horgan et al.⁷⁸ (2022) Ireland	PPI stakeholders (n = 34) PPI Advisory Committee (n = 20) Mixed methods	NR	NR	NR	NR	Stroke	Conceptual Design/Planning Empirical Analytic Dissemination	Collaborate Collaborate Collaborate Collaborate Involve
Kjörk et al.⁸⁶ (2022) Sweden	Expert panel (including 1 patient partner) (n = 11) Participants in usability testing (n = 22) Workshops	Expert Panelists: 8 (73), patient partner was male Participants in usability testing: 9 (41)	Expert Panel: median age 55 y (42–70 y)^∗ Patient partner: NR Median age of participants in usability testing: 59 y (42–83 y)^∗	NR	NR	Stroke	Design/Planning Analytic Dissemination	Involve Involve Involve
Küçükkaya et al.⁸⁸ (2023) Turkey	NR Cross-sectional study	NR	NR	NR	NR	HF	Design/Planning	Consult
Leifeld et al.⁸⁹ (2009) North-Rhine Westphalia, Germany	Hairdressers (n = 33) Surveys	NR	NR	NR	NR	Stroke	Conceptual Design/Planning	Collaborate Collaborate
Pedersen et al.⁹¹ (2022) Denmark	PPI Board (n = 4) Single-arm feasibility study	NR	NR	NR	NR	MI	Design/Planning	Consult
Proios & Tsakpounidou⁹⁹ (2020) Northern Greece	Patient partners (stroke survivors) (n = 2) Cross-sectional study	2 (100)	27 and 44 y	NR	NR	Stroke	Conceptual Design/Planning	Involve Involve

CAB, Community Advisory Board; CBPR, community-based participatory research; CG, caregivers; COPD, chronic obstructive pulmonary disease; C-RAB, Community Research Advisory Board; CVD, cardiovascular disease; HF, heart failure; LGBTQ+, lesbian, gay, bisexual, transgender, queer and/or questioning, plus others such as nonbinary, intersex, etc; MI, myocardial infarction; NR, no response; PPC, Patient-Partner Committee; PPI, patient and public involvement; PROMS, patient-reported outcome measures; PWS, persons with stroke; RCT, randomized controlled trial; SD, standard deviation; UK, United Kingdom.

^∗

Data not disaggregated by sex.

^†

Total numbers not reported.

^‡

Missing data, n = 1.