Table 1.
Characteristics of included studies
| First Author (year) | Country (Geographical Area) | Study objectives | Initiator | Study design | Data collection method | Stakeholders | Quality assessment | Sample size | |
|---|---|---|---|---|---|---|---|---|---|
| 1 | Arcia (2016) [16] | New York, USA | To collaborate with community members to develop tailored infographics that support comprehension of health information, engage the viewer, and may have the potential to motivate health-promoting behaviors | Columbia Community Partnership for Health | Participatory Research | Surveys, Voice record, Hand vote | Washington Heights and Inwood community members | 75% | 102 |
| 2 | Kunz (2017) [17] | Santa Cruz County, Arizona USA | This case study describes the program components and key lessons learned from implementing Vivir Mejor! (Live Better!), a program tailored for the rural, Mexican American population | Organizers of the Diabetes prevention and management program | Case Study | Workshops, Digital Story Screening | The rural, Mexican American population | 75% | 136 patients for education sessions 137 participants attended nutrition sessions and 243 evaluated for HbA1c |
| 3 | Carpenter (2018) [18] | Unspecified, USA | To advance the practice of patient and family-centered care in hospitals, promoting medication therapy management for at-risk populations, and reducing non-agent emerg services | AHRQ Health Care Innovations Exchange | Program Evaluation | Mixed-Methods | Learning community members, project staff | 75% | 3 Learning Communities |
| 4 | Chhabra (2018) [19] | Punjab, India | To test the feasibility of a peer-driven intervention model in cervical cancer prevention in India | Two Northern India Universities | Program Implementation and Evaluation | Surveys, Workshops | Regular community members who identified as women aged 18–50 | 91.7% | 68 |
| 5 | Fung-Kee-Fung (2018) [20] | Ontario, Canada | To describe a system approach to redesign care, enabling timely access of patients suspected of lung cancer to a centralized specialty service while creating the dynamic adaptability to address both clinical and operational challenges | The Ottawa Hospital and the Ottawa Health Transformation Model | Program Implementation and Evaluation | Semi-structured Interviews, Stakeholder Mapping | Community of practice was established to engage stakeholders | 75% | 68 Key Influencers |
| 6 | Key (2018) [21] | Michigan, USA | To draw on lessons learned from decades of community-engaged health research and practice locally in the Midwest Region, and at the national level addressing issues related to genomics | Flint Community Based Organization Partners & National Community Committee of the CDC’s Prevention Research Centers | Community-based Participatory Research | Continuum Model | Flint Community Based Organization Partners, Patient-Centered Outcomes Research Institute, National Community Committee of CDC's prevention research centers | 66.6% | – |
| 7 | Myers (2018) [22] | Philadelphia, USA | To describe components of a health system learning community and describe a learning community strategy that involved forming multiple teams to address cancer screening and disparities in 2 health systems | Thomas Jefferson Health Team and the Lehigh Valley Health Network | Program Implementation | Quantitative data collection, Focused interviews | Diverse patients, health care providers, health systems leaders, public and private payers, and other stakeholders | 83.3% | 73 Interviews |
| 8 | Gierisch (2019) [23] | North Carolina, USA | To explore views, barriers, resources, and perceived values of engaging patient advisors in a national program of evidence synthesis research | Veteran Affairs Evidence Synthesis Program (ESP) | Qualitative | 10 Interviews & 2 Focus Groups | ESP leaders (directors, associate directors) and programmatic staff, research assistants | 91.7% | |
| 9 | Murray (2019) [24] | Boston, USA | To make the medical and patient communities aware of an Autism Learning Network that is based on the Institute of Medicine's definition of LHS | Autism Intervention and Research Network on Physical Health | Program Implementation and Evaluation | Quantitative data using a web portal, Document reviews and Observations | Anderson Center team, parents, clinicians, researchers, and data analysts/biostaticians | 75% | 12 Network Sites |
| 10 | Baba (2020) [25] | Republic of Congo, Africa | To identify strategies that can help to attract, support, and retain midwives in the fragile and rural Ituri province | Three Health Districts | Qualitative Participatory Research | Workshops & Phone Interviews | Female midwives, decision makers, managers | 91.7% | 49 |
| 11 | Curtis (2021) [26] | Manitoba, Ontario, British Columbia, Saskatchewan, Canada | To further collaborative efforts to improve access to preventive health care for kidney patients and their caregivers using culturally safe practices | Local Indigenous community health care stakeholders | Participatory Action Research | Workshops, Modified Delphi | Male and female patients, caregivers, Indigenous peoples, researchers, and policy makers | 66.6% | 30 |
| 12 | Donahue (2021) [27] | Arizona, USA | To describe the organization of the Epilepsy Learning Health care System (ELHS), a network that aims to improve care outcomes for people with epilepsy (PWE) | Epilepsy Centers and Community Services Organizations | Quality Improvement | Analytic Tools | Patients and family partners, providers, researchers, epidemiologists, and other leaders | 66.6% | – |
| 13 | Golden (2021) [28] | Unspecified, USA | To examine a proof-of-concept project to develop processes within the WH-PBRN for rapid data collection to address queries from operations partners, while also returning impactful information to participating sites | Veterans Affairs Women’s Health Practice-Based Research Network | Program Implementation and Evaluation | Surveys, Administrative Data, Debriefing Notes | Women veterans, their providers, and their care settings | 83.3% | 1191 Women Veterans |
| 14 | Irby (2021) [10] | Southeastern USA | To understand how CEnR has been conducted and to identify needs to support CEnR within an emerging academic learning health system | Wake Forest School of Medicine/Wake Forest Baptist Health | Qualitative | Semi-structured Interviews | Faculty and research associates | 83.3% | 18 |
| 15 | Keck (2021) [29] | Ohio, USA | To describe efforts in ImproveCareNow, a CLHS improving outcomes in pediatric inflammatory bowel disease (IBD), to increase the number of patients and families creating and accessing IKK, and the challenges faced in that process | ImproveCareNow CLHS Framework | Program Evaluation | Trusted Messengers, Community Organizing and Digital Outreach | Patients and their families | 75% | 91 Care Centres |
| 16 | Beks (2022) [30] | South West Victoria, Australia | To use the CONSIDER statement to critically reflect participatory research undertaken in partnership with an ACCHO in the rural context and identifies lessons of value for future research | Aboriginal Community Controlled Health Organisations (ACCHO): Dhauwurd Wurrung Elderly and Community Health Service, Deakin Rural Health (University Department of Rural Health) | Participatory Research | Clinical Audit, Scoping review, Yarning: Sharing stories | Aboriginal Community Controlled Health Organisations Dhauwurd Wurrung Elderly and Community Health Service, Deakin Rural Health (University Department of Rural Health) | 75% | - |
| 17 | Lindeman (2022) [31] | NPY, Australia | This participatory action research project aimed to improve service delivery for Aboriginal women from the Ngaanyatjarra Pitjantjatjara Yankunytjatjara (NPY) region in remote central Australia | Domestic and Family Violence Service (DFVS) of NPY | Participatory Action Research | Four two-day workshops | Senior Anangu women, Anangu DFVS Staff members, non-aboriginal staff members, psychotherapist | 58.3% | |
| 18 | Marsh (2022) [32] | Ohio, USA | This project aimed to deliver patient-centered and equitable diabetes care services that were previously unavailable to underserved older patients, and to improve outcomes | The Diabetes COACH Team | Quality Improvement | Biweekly Community Health Worker home visits and diabetes self-management education to measure the outcomes for 12 weeks, Mixed-methods | Diabetes COACH Team, Community health workers, Nurse Practitioner, Adults aged 65 years or older with uncontrolled Diabetes Mellitus type 1 or 2 | 83.3% | 12 |
| 19 |
Mishra (2022) [33] |
Odisha, India | To identify and explore the contextual factors embedded in the current health care delivery process through community participation at the village level | All India Institute of Medical Sciences | Participatory Action Research, Qualitative | Community-centered Group Activities ( Participatory Learning Action Tool) | Resident doctors, medical social workers, community members, other local health care workers | 83.3% | 20 |
| 20 | Oser (2022) [34] | Colorado, USA | This study aimed to use a community based participatory approach called ‘Boot Camp Translation’ to adapt an existing Diabetes Self-Management Education Support program for delivery in rural primary care for English- and Spanish-speaking people with diabetes | The High Plains Research Network Community Advisory Council and the University of Colorado and University of Utah | Community-based Participatory Research | 10 Virtual meetings | English-speaking and bilingual Spanish–English–speaking members from the High Plains Research network Community Advisory Council, researchers from the University of Colorado and University of Utah | 58.3% | - |
| 21 | Pitchalard (2022) [35] | Chiang Rai,Thailand | This study aimed to investigate the effect of a peer-training program for village health volunteers (VHVs) to improve chronic disease management among older adults in rural Thailand | The Research Team | Program Implementation and Evaluation | Three-day training workshop once every three weeks, Mixed-methods | The research team, nurse practitioners, village health volunteers, community members | 83.3% | 78 |
| 22 | Pullyblank (2022) [36] | New York, USA | To use the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework to evaluate the diabetes and chronic disease self-management programs offered through the ‘Living Well’ program | Living Well Project Team | Quality Improvement, Program Implementation and Evaluation | Six week chronic disease and diabetes self-management workshops, RE-AIM tools, Mixed-methods | Living Well project team, community-based organizations, caregivers, anyone living in a rural area with a chronic condition, | 75% | 600 |
| 23 | Quraishi (2022) [37] | Haryana, India | To develop TB-related story content using community knowledge and experiences; use the digital storytelling for TB awareness and education; and assess the effectiveness of the storytelling in reaching its audience, increasing TB awareness, and subsequently increasing TB notifications | ZMQ Development (ZMQ), an organization based in Delhi, India | Program Evalution | Surveys, TB notifications, Discussions with ZMQ project staff, and with women visiting TB health centers | ZMQ project staff, individuals visiting TB centers in Punhana block, local leaders, women’s self-help groups, local ASHA workers, and other local health workers | 83.3% | 731 survey & 19345 patients screened |
| 24 | Gregg (2023) [38] | Guatemala, Central America | To understand if the Care Group Approach as applied in the Curamericas/Guatemala Maternal and Child Health Project in isolated rural mountainous communities in Guatemala produced evidence of empowerment among the female participants | Curamericas/Guatemala Maternal and Child Health Project Staff | Qualitative | Semi-structured individual and group interviews, Care groups | Ququilum and Jajhuitz and Paiconop Grande and Aldea Poza community members, Curamericas Maternal and Child Health Project staff, Care Group Volunteers, Promoters, Self-help group participants | 83.3% | 96 |
| 25 | Niranjan (2023) [39] | Alabama, USA | To measure Lung Cancer Screening knowledge before and after receiving education delivered by community health advisors (CHAs) among high-risk individuals living in medically underserved communities of Alabama and to determine impact of psychological, demographic, health status, and cognitive factors on rate of lung cancer screening participation | The Research team | Quantitative | Questionnaires | Local county coordinators and community health advisors, community members over the age of 55 | 66.6% | 100 |