Facilitators and barriers to patient and public involvement in developing learning health systems within community health services: ascoping review.
Learning Health Systems (LHS) integrate research, clinical expertise, and patient data to continuously improve health care. Although community engagement is central to LHS, existing literature has largely focused on data infrastructure, clinical improvement, and system learning, with limited attention to meaningful patient and public involvement (PPI) in community-based care. This review aimed to identify facilitators and barriers to such involvement in the development of LHS in community health services.
We conducted a scoping review in line with the JBI methodology and searched MEDLINE (Ovid), CINAHL, Embase, PsycINFO, Scopus, Web of Science, and Google Scholar. Reference lists were searched using forward and backward citation. The date of the last search was August 10, 2026. We excluded studies conducted in acute or hospital settings and conference proceedings. Two reviewers independently screened and extracted data using Covidence, and NVivo was used to synthesize the outcomes.
We identified 12 studies published between 2017 and 2025, most conducted in the United States (75%). Studies included diverse populations such as older adults, individuals with chronic disease survivors, LGBTQ+ individuals in cancer survivorship care, and stroke survivors. Patient and public involvement ranged from consultation and interviews to partnership and co-design, while shared governance or co-led models were uncommon. Barriers to meaningful involvement included mistrust in healthcare systems, structural inequities, fragmented care pathways, poor communication, limited infrastructure, lack of sustainable engagement support, and power imbalances that contributed to tokenistic participation. Facilitators included trust-building, mutual respect, community partnerships, culturally responsive engagement, co-design approaches, and supportive organizational leadership. Strategies to enhance engagement included care coordination tools, telehealth, inclusive recruitment practices, bidirectional feedback systems, knowledge translation initiatives, and patient and family participation in decision-making and service design.
This review highlights that meaningful patient and public involvement in Learning Health Systems depends not only on technical infrastructure, but also on relational, organizational, and structural conditions that support equitable participation. Findings suggest that community-based LHS development requires sustained investment in trust-building, shared decision-making, inclusive governance, and long-term engagement strategies. Future research should examine how participatory approaches influence equity, governance, service improvement, and long-term Learning Health System outcomes.
We conducted a scoping review in line with the JBI methodology and searched MEDLINE (Ovid), CINAHL, Embase, PsycINFO, Scopus, Web of Science, and Google Scholar. Reference lists were searched using forward and backward citation. The date of the last search was August 10, 2026. We excluded studies conducted in acute or hospital settings and conference proceedings. Two reviewers independently screened and extracted data using Covidence, and NVivo was used to synthesize the outcomes.
We identified 12 studies published between 2017 and 2025, most conducted in the United States (75%). Studies included diverse populations such as older adults, individuals with chronic disease survivors, LGBTQ+ individuals in cancer survivorship care, and stroke survivors. Patient and public involvement ranged from consultation and interviews to partnership and co-design, while shared governance or co-led models were uncommon. Barriers to meaningful involvement included mistrust in healthcare systems, structural inequities, fragmented care pathways, poor communication, limited infrastructure, lack of sustainable engagement support, and power imbalances that contributed to tokenistic participation. Facilitators included trust-building, mutual respect, community partnerships, culturally responsive engagement, co-design approaches, and supportive organizational leadership. Strategies to enhance engagement included care coordination tools, telehealth, inclusive recruitment practices, bidirectional feedback systems, knowledge translation initiatives, and patient and family participation in decision-making and service design.
This review highlights that meaningful patient and public involvement in Learning Health Systems depends not only on technical infrastructure, but also on relational, organizational, and structural conditions that support equitable participation. Findings suggest that community-based LHS development requires sustained investment in trust-building, shared decision-making, inclusive governance, and long-term engagement strategies. Future research should examine how participatory approaches influence equity, governance, service improvement, and long-term Learning Health System outcomes.
Authors
Dos Santos Dos Santos, Vasarhelyi Vasarhelyi, Wong Wong, Berndt Berndt, Windsor Windsor, Yuen Yuen, Zhao Zhao, Wong Wong, Macdonald Macdonald, Pilarinos Pilarinos, Hung Hung
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