Facilitators and barriers to patient and public involvement in developing learning health systems within community health services: ascoping review

Abstract

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. Healthcare services should improve by learning from the people who use them, such as patients, families, caregivers, and community members. Their experiences can help us understand what is working, what is not, and what needs to change. In this article, we looked at previous research on how patients and the public are included in improving community health services. These services include primary care, home and community care, long-term care, and other care outside hospitals. We found that many projects asked patients and community members for their opinions. This often happened through interviews, meetings, or feedback sessions. However, patients and community members were not always included as equal partners in making decisions. Several things made it harder for people to take part. These included lack of trust in healthcare, poor communication, not enough time or money, transportation problems, limited internet or technology, and some people having more power than others. These issues can make it especially hard for people from underserved communities to be involved in shaping the healthcare services that serve them. We also found that involvement worked better when healthcare organizations listened carefully, built trust and meaningful relationships, worked with community groups, and made it easier for people to take part. Overall, this review shows that better healthcare is not just about better data or technology. It is also about listening, sharing power, and building long-term relationships.