Table 3 Characteristics of knowledge users and engagement
Author(s), year | Knowledge users | IAP2 level of engagement | Engagement stage CORE | Mode of engagement | Duration, frequency, timing | |||||
|---|---|---|---|---|---|---|---|---|---|---|
1 Research question | 2 Research proposal | 3 Admin pre-launch | 4 Recruitment and data collection | 5 Data analysis | 6 Dissemination and implementation | |||||
N = 42 | N = 39 | N = 30 | N = 51 | N = 45 | N = 26 | |||||
Abdul Qader and King, 2015 [37] | Student’s academic supervisor, clinical experts (the physician lead for colorectal cancer services and two advanced clinical nurse specialists in the gastrointestinal programme), clinical pharmacologists | Involve | ✓ | Receiving advice and feedback (mode not described) | NR | |||||
Abelsohn et al., 2011[38] | LGBTQ members, students, faculty members | Involve | ✓ | Meeting, a callout for committee members sent through varies channels | NR | |||||
Allen and Hutchinson, 2009[68] | Patients with end-stage renal disease (ESRD), policy-makers, healthcare providers or anyone trying to improve the quality of life and treatment for patients living with ESRD, filmmakers working with patient populations | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | Meeting and discussion | 3 h | |
Atherton et al., 2016 [39] | Healthcare providers: new speech-language pathologists with undergraduate degrees in other health professions (e.g., physiotherapy, medicine, nursing) | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Interview, meetings (e.g., Skype) | 24–30 months |
Baukus 2019 [69] | Independent community groups and a faculty member. Community partner is a local group of artists, designers, researchers, educators and social workers working together to improve access to quality mental healthcare services | Collaborate | ✓ | ✓ | Meetings and conference calls | NR | ||||
Bellows Riecken, 2012 [89] | Community partner organization | Collaborate | ✓ | ✓ | ✓ | Survey | NR | |||
Blum, 2006 [86] | Nurse preceptors, clinical faculty, nurse preceptors, hospital nurse educators and nursing administrators | NR | ✓ | ✓ | Action plan | 13 months, from May 2005 to June 2006 | ||||
Björnsdóttir and Svensdóttir, 2008 [105] | Young Icelandic adult who is a self-advocate with learning disabilities | Collaborate | ✓ | NR | Once per week for 6 months | |||||
Bloodworth et al., 2004 [43] | Community researchers | NR | NR | NR | NR | |||||
Burgess 2006 [44] | Nurse Practitioners | Involve | ✓ | ✓ | Meeting, written handout, discussion | A total of five meetings, 2–3 h in length | ||||
Burgess 2009 [67] | ||||||||||
Boland, 2020 [100] | Clinician-scientist (medical director of the Children's Hospital of Eastern Ontario [CHEO] shared decision-making programme, paediatric endocrinologist), registered nurse | Involve | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Meeting, and regular team meetings, regular process updates | Regular team meetings (3–4 per year) |
Bowyer, 2018 [95] | Professionals engaged in health planning within NHS Scotland, community stakeholder groups : – Remote and rural area, 7 community groups including community council, primary school parent group, retrained fire service, patient participation group, community shop committee, community hall committee – Accessible rural community, 5 community groups including primary school parent groups, friendship group, mother and toddler group, community council, patient participation group | Collaborate | ✓ | ✓ | ✓ | Focus group, participatory mapping techniques, interviews | NR | |||
Bishop et al., 2018 [97] | A total of 15 faculty and facilitators, including two patient advisors. The two patient advisors represented independent patient advisory networks and were active in their respective provincial Strategy for Patient-Oriented Research (SPOR) units | Involve | ✓ | NR | NR | |||||
Campbell, 2006 [93] | Paediatric community in Prince Edward Island, Canada | Consult | ✓ | ✓ | Group meetings, group interviews | NR | ||||
Cassidy, Burgess et al., 2019 [45] | A group of Health System Impact (HSI) postdoctoral fellows | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | NR | NR | |
Cassidy and Foley et al., 2019 [78] | Manager of the medical, surgical and neuroscience unit, clinical nurse leaders, researchers, administrators | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | KT research processes | NR | |
Conway et al., 2020 [81] | Healthcare providers working in the neonatal and obstetric departments. Five knowledge users (nurses and midwives working in the neonatal and obstetric departments) made up an on-site implementation team | Collaborate | ✓ | ✓ | ✓ | Reaching out to key informants within the targeted hospital departments and through word-of-mouth recommendations, focus group and interview | Six group sessions, 9 months | |||
Dunn et al., 2020 [91] | Administrator, education consultant, two nonviolence educators, teacher, nursing faculty member and a doctoral student who possessed paediatric expertise | Collaborate | ✓ | A series of discussions, evaluation included a pre-/post-test, open-ended written questions, a focus group | NR | |||||
Dalal et al., 2009 [104] | Steering community consisting of community leaders and community-focused academicians | Involve | ✓ | ✓ | ✓ | ✓ | ✓ | Interview, seminar, structured feedback, meeting, retreat | NR | |
DeLemos et al., 2007 [47] | Navajo people | Collaborate | ✓ | ✓ | ✓ | Cultural education | NR | |||
Dewitt, 2011 [103] | Policy-maker, America’s Promise Alliance members, Oakland’s Promise Alliance members | Collaborate | ✓ | ✓ | Dialogue, brainstorming, critical reflection, group meetings, field notes from formal and informal meetings, observation, and community consultation, interview | Two 2-h meetings | ||||
Donnelly, 2013 [56] | Occupational therapists, the executive director and the lead physician at the family health team, membership of the evaluation committee (all members of the memory clinic, one Alzheimer Society member, the executive director) | Collaborate | NR | Informal meeting, case study, evaluation committee was formed, member-checking | NR | |||||
Fletcher and Marchildon, 2014 [106] | Each round of the study included up to four health system actors as both research partners and participants Participants in the study represented three levels of authority within the health system and were categorized into three corresponding participant groups: – Group 1 included governance and directional leadership at the ministry and health region executive level – Group 2 consisted of shared services senior leadership immediately below CEO level at collective and individual project stream levels – Group 3 included frontline leadership of existing business units within each project | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | Delphi technique | NR | |
Fletcher and Marchildon, 2018 [107] | ||||||||||
Feroz, 2009 [110] | Early Head Start parents, Early Head Start practitioners, and community stakeholders | Collaborate | ✓ | ✓ | ✓ | Group sessions, focus groups | Weekly, 22 group sessions | |||
Gibbon, 2002 [40] | Academics/researchers | NR | NR | NR | NR | |||||
Gilhooly and Lynn, 2014 [41] | Three adolescent Sgaw Karen brothers, and Karen communities | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | Semi-structured interviews, informal meeting | 40 interviews, biweekly | |
Goessling and Doyle, 2009 [42] | High school students, teachers, counsellors, therapists, mentors and others who desire to have positive relationships with teenagers | Involve | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Tutoring, mentoring, leadership development, summer enrichment programmes, photo exhibition | 20 weeks |
González, 2012 [71] | Latino immigrant parents of English language learner students | Collaborate | ✓ | ✓ | ✓ | Meeting, focus group | NR | |||
Smithers, Graeme and Mandawe, 2017 [46] | Indigenous person research assistant, urban First Nations men | NR | ✓ | ✓ | ✓ | ✓ | ✓ | NR | NR | |
Haywood et al., 2019 [72] | Adolescents and young adults with chronic conditions, researchers, healthcare providers and related stakeholders | Collaborate | ✓ | ✓ | ✓ | Virtual or in-person meetings, phone or email communication, conference, academic meetings | At least monthly | |||
Hilario, 2018 [57] | Six immigrant and refugee young men (self-identified as an immigrant and refugee young men from China, Philippines, Mexico, Colombia and Afghanistan), an advisory group comprising service providers and programme leaders | Collaborate | ✓ | ✓ | ✓ | ✓ | Conversations, structured meetings with advisory group, unstructured consultations, dialogue | NR | ||
Hohn, 1998 [65] | Student action health team, literacy programme environment administration and staff, external empowerment public health and education agencies- funders, administration and staff | Collaborate | ✓ | ✓ | ✓ | Meeting, field notes, written communications, informal conversations, interviews and semi-structured interviews, discussions, surveys | Two surveys, two group interviews, eight individual interviews | |||
IKTRN [98] | Trainee A: clinical team of a paediatric inpatient unit Trainee B: a team of people from Island Health, organized speakers from Island Health, community organizations, and members from the Nanaimo municipality | Consult | ✓ | ✓ | Trainee A: NR Trainee B: written report | NR | ||||
Jull et al., 2019 [92] | A steering committee that consisted of members from Inuit-led or Inuit-specific (or both) health and related organizations that support Inuit in cancer care systems | Consult | ✓ | ✓ | ✓ | ✓ | Consensus-building methods, feedback | NR | ||
Jervis, 2019 [59] | The Medicines for Children Research Network (MCRN), Young Persons Advisory Groups (YPAGs), National Institute for Health Research network -The YPAGs consist of 10 to 15 members who are aged 8–19 years -The groups consisted of a total of 23 young people aged 8–17 years comprising 16 girls and 7 boys -Nursing staff | Consult and Involve | ✓ | ✓ | ✓ | ✓ | ✓ | Focus group, face-to-face discussion | NR | |
Jones, 2012 [64] | Students and academic staff from the selected schools | Involve | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Semi-structured focus groups and interviews | NR |
Jones, 2019 [62] | Aboriginal and Torres Strait Islander: Palngun Wurnangat Aboriginal Corporation (PWAC) and Kardu Lurruth Ngala Purrungime (KLNP) committee | Consult | ✓ | ✓ | ✓ | NR | NR | |||
Khobzi and Flicker, 2010 [70] | The Positive Youth Project (Flicker): service providers, unspecified "partnering organisations" and HIV-positive teens and young adults, a public health research unit, a hospital, a national AIDS service organization, grassroots POZ youth group The Trans PULSE Project (Khobzi): trans people, representatives from trans community organizations, academic partners, and unaffiliated trans community members, a primary healthcare centre, a community centre | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Meetings, interview | 35 interviews |
Kinman, 2017 [82] | University of California, San Francisco Fresno Pediatric Residency Program and the women’s alliance class at the high school during the school years 2015–2016 and 2016–2017 | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Discussion, survey, | NR |
Lac and Fine, 2018 [74] | The individual youth researchers in our cohort of 11 (high school students) | Collaborate | NR | Dialogical approach | NR | |||||
Laur et al., 2020 [79] | Local champions, who were already (in most cases) employed as dieticians within managerial or leadership roles | Empower | ✓ | ✓ | ✓ | ✓ | ✓ | Monthly group calls | Monthly | |
Leslie et al., 2010 [49] | 10 Native Hawaiian-serving organization workers, administrators, advisors from the worksites | Involve | ✓ | ✓ | ✓ | ✓ | ✓ | Meetings, interviews, focus groups for open discussion | 9 focus groups, 90 min | |
Lewis, 2020 [77] | Steering committee: multidisciplinary team of knowledge users (director of the arrhythmia service, the ambulatory device clinic nursing manager, a device clinic registered nurse, expert researchers in patient decision aids development, two patients who had previously undergone implantable cardioverter-defibrillator replacement and the spouse of a patient with an implantable cardioverter-defibrillator | Involve | ✓ | ✓ | Steering committee, email, telephone, meeting, feedback | Steering committee met twice | ||||
Lillehagen, 2017 [96] | Researchers, physiotherapist, physiologist, clinical coordinators | Collaborate | ✓ | ✓ | ✓ | Meetings with structured agenda | NR | |||
Lind, 2006 [87] | Adolescents | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | Interviews | NR | |
Maher, 2018 [61] | Aboriginal health workers, locally identified Aboriginal community researchers, including members of the Kardu Lurruth Ngala Purrungime committee, department of the Prime Minister and Cabinet Indigenous Affairs Group Policy Analysis and Evaluation Branch | Collaborate | ✓ | ✓ | Survey, training | NR | ||||
McCaig, 2019 [63] | Patients, staff, carers and students, mental health institution staff, policy-makers, educationalists and researchers | Involve | ✓ | ✓ | ✓ | Interviews, focus groups and reflection groups | NR | |||
McHugh, 2008 [85] | The known sponsor (the director of Nutana’s Integrated School-Linked Services programme) and a group of 7 young Aboriginal women who represented the Core Group. Students, teachers, and staff at Nutana Collegiate, and also a known sponsor who was embedded in the administration | Empower | NR | Interviews, focus groups | NR | |||||
Medcalf, 2008 [75] | Six elders with a considerable diversity, including age, gender, socioeconomic status, formal education, religious affiliation, former occupation, current household and type of housing, sexual orientation, marital status, whether they have children or grandchildren, their interests as well as their life experience in general. All are white, speak English as their first language and all but one has grown up in southern Ontario | Collaborate | ✓ | ✓ | ✓ | One-page autobiography to present to the group, workshop, individual conversations | NR | |||
Mitchell, 2018 [102] | American Indian tribe | Involve | ✓ | ✓ | ✓ | Recruitment flyer, attendance of local events including annual gatherings and reoccurring activities | NR | |||
Moll and Clements, 2008 [73] | Employees with mental health issues, insurers, healthcare professionals, human resource personnel, researchers and education, unions, managers, occupational health and disability management providers | Collaborate | ✓ | ✓ | Focus group, feedback, meetings | NR | ||||
Murdoch, 2006 [66] | Women with disabilities, an academic, a community leader of a local disability organization, a graduate student in women’s studies, government, researchers, policy-makers | Collaborate | ✓ | ✓ | Email communication, interview, personal letter | NR | ||||
Munro, 2018 [54] | Patients, providers, and policy-makers in British Columbia | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | Ongoing feedback, co-writing | NR | |
Nadimpalli et al., 2016 [48] | Sikh Asian Indian community partners (including social service agencies, advocacy groups, and healthcare providers) serving the South Asian community) | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | Coalition meetings, relationship-building activities | 2 years | |
Ormel and Law, 2020 [53] | National and international staff member from the nongovernmental organization (NGO) Action Contre la Faim, different governmental agencies, NGOs, traditional healers | Inform and Collaborate | ✓ | ✓ | ✓ | ✓ | Telephone meeting, email communication, focus group discussion | NR | ||
Oosman, 2012 [83] | Meti's Community | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Phone discussion, verbal agreement, face-to-face meetings | NR |
Pratt et al., 2019[108] | Masters in nursing students | Involve | ✓ | ✓ | ✓ | ✓ | ✓ | Two exercises to clarify values and ways of working, meetings, follow-up feedback session | NR | |
Ramage et al., 2020 [80] | The research team: four knowledge-user partners (one person with a lived experience of stroke, two physiotherapists with research experience, one exercise scientist experienced in telehealth exercise with stroke survivors) and five researchers (one PhD candidate [physiotherapist] and four PhD supervisors with research expertise in physiotherapy and nutrition and dietetics) Knowledge-user informants: healthcare workers, such as doctors, nurses, physiotherapists, managers; stroke survivors; carers; behaviour change researcher | Collaborate | ✓ | ✓ | ✓ | ✓ | Workshops, individual interviews, teleconferencing into workshops | NR | ||
Ramstetter, 2010 [88] | Students, teachers, staff, parents, volunteers and the school board | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Meeting, written communication | NR |
Reale, 2011 [84] | Students and staff at the high school | Consult | ✓ | ✓ | NR | NR | ||||
Roberts et al., 2016 | Guardians of the youth, urban Indian young women | Collaborate | ✓ | ✓ | Semi-structured interviews, art project | |||||
Robinson, 2007[94] | The four individuals served as consultants in mental health-related research and had self-disclosed that they had (or previously had) a mental illness | Consult | ✓ | ✓ | Email communication, telephone communication, formal letter, written communication including journaling, feedback (via email) | NR | ||||
Sanderson et al., 2020 [99] | One registered nurse in a psychiatric outpatient setting, two medical doctors and one social worker in a postsecondary (PS) institution, one nursing student interested in mental health, one student with lived experience of psychosis, and one director of health and wellness services in a PS institution, one occupational therapist working for a first-episode psychosis programme, a nursing professor of mental health at a PS institution, a mental health policy advisor at a PS institution, and a research scientist involved with improving youth mental health services and supports | Collaborate | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | Introductory meeting, written partnership agreement, advisory panel, meetings, email or telephone communication, presentation | NR |
Schuch, 2017 [50] | Partners included health and social service providers, educators, Hispanic foreign-born residents and a community advisory board, which included representatives from the local school system, the county health department, and the city of Charlotte | Collaborate | NR | Key informant interviews, focus groups, a photovoice project, and community forums | NR | |||||
Shelton, 2012 [51] | First project: five graduate students and environmental sociology professor, a group of fourth-, fifth- and sixth-grade students at an upper-elementary school in Hammond, Louisiana Second project: 12 graduate students and professor, fourth-, fifth- and sixth-grade students at the same upper-elementary school in Hammond | Collaborate | ✓ | ✓ | Survey, meeting, dialogue, journal, discussion | NR | ||||
Sim et al., 2019 [101] | Postdoctoral Fellows | Collaborate | ✓ | ✓ | ✓ | ✓ | NR | NR | ||
Suderman et al., 2020 [90] | Cancer survivors and caregivers | Inform | ✓ | Questionnaires, semi-structured interviews | NR | |||||
van der Meulen, 2011 [76] | Sex workers | Collaborate | ✓ | ✓ | ✓ | ✓ | Informal meetings, email conversation, interview | NR | ||
Volpē, 2017 [60] | Young people in a rural Appalachian community | Involve | ✓ | ✓ | Class format, photographs, discussion | In class, once per week | ||||
Videmšek and Fox, 2018 [55] | First author: five people with personal experience of mental ill health Second author: a steering group of stakeholders including people from professional, family-caring and research backgrounds | Collaborate | NR | NR | NR | |||||
Wilbricht, 2017 [52] | Primary community partners (the general managers of two tribal radio stations), community members | Empower | ✓ | ✓ | ✓ | ✓ | ✓ | Written agreement, interviews | NR | |
Wine et al., 2017 [58] | Health, and knowledge translation experts | Consult | ✓ | ✓ | ✓ | ✓ | ✓ | NR | NR | |