The past decade has witnessed a growing emphasis on patient and public involvement (PPI) in health research, recognizing its contribution to improved research quality and relevance. Pre-pandemic, PPI integration was gaining momentum. However, the rapid response to COVID-19 initially sidelined PPI, leading to minimal inclusion of patient and public perspectives, especially from minority groups, in addressing the pandemic crisis. PPI, ideally conducted 'with' or 'by' the public rather than 'for' them, involves active partnership among patients, providers, the public, and researchers to ensure inclusivity and relevance. Integration throughout the research process has positive impacts including user-focused research questions, user-friendly information, better recruitment, consumer-focused data interpretation, and improved implementation and dissemination. While the PPI evidence base has expanded, reporting remains inconsistent, hindering the appraisal and synthesis of evidence for systematic reviews. This inconsistency poses significant challenges, particularly in the context of numerous COVID-19 systematic reviews exhibiting non-replicable and poorly reported findings. The study aims to address this gap and explores the nature and extent of PPI in COVID-19 health and social care research and its contribution to public health measures. Public health measures (PHM), critical for combating infectious diseases, encompass personal, pharmaceutical, and systems-level interventions. Effective PHM require understanding the nuanced perspectives of diverse communities.

The umbrella review aimed to synthesize existing systematic reviews on PPI and PHM during the COVID-19 pandemic. It focused on the nature and extent of PPI and its use in PHM development. The authors highlight the inconsistency in PPI reporting and the subsequent challenges this poses for evidence synthesis and informing future strategies. Several key concepts are defined such as the NIHR definition of PPI and the WHO's taxonomy of PHM. The review addresses the societal level benefits of PPI, and the importance of tailoring PHM to specific community contexts. It establishes the importance of understanding diverse community needs to design effective interventions and avoid unintended consequences of PHM.

This umbrella review employed a systematic approach adhering to the JBI manual for evidence synthesis and the PRISMA-ScR checklist. A protocol was registered with PROSPERO. Searches across nine databases (including EBSCO, PsycINFO, CINAHL, MEDLINE, and Google Scholar) were conducted using a PICo framework, identifying keywords and controlled vocabulary terms related to PPI, PHM, and COVID-19. A systematic review filter was used to refine the search results. The search strategy involved preliminary searches, database searches, and examination of reference lists. Inclusion criteria specified peer-reviewed articles published in English between 2020 and 2022, including any type of literature review (systematic review, rapid review, etc.) that addressed PPI and PHM in COVID-19 research. Exclusion criteria focused on non-systematic reviews and individual research studies. Ten graduate students screened titles/abstracts and full texts, with discrepancies resolved through discussion or consultation with a third reviewer. Methodological quality of included systematic reviews was assessed using the JBI Critical Appraisal Checklist. Data extraction was done using the JBI Data Extraction Form and verified by a second reviewer. A narrative synthesis was used to summarize and analyze the findings from the six included systematic reviews.

The search identified 1437 unique records, reduced to 731 after duplicate removal. After title/abstract screening and full-text review, six systematic reviews met the inclusion criteria. The methodological quality of these reviews varied, with three classified as medium risk of bias and three as low risk of bias. The included studies revealed diverse models of PPI, including written feedback, stakeholder conversations, and working groups. Key findings across the included studies highlighted several important themes: * **Mortality Risk Information:** A lack of public and patient engagement in the development of COVID-19 risk prediction tools and a lack of mortality risk information tailored for patients with underlying conditions were identified. Despite this, sustained interest and engagement in developing such tools were observed. * **Volunteering:** Diverse models of organization and coordination in COVID-19 volunteering were found, with community support groups adapting to changing needs. Social networks, local knowledge, and trust played crucial roles. * **Digital Contact Tracing (DCT):** Adoption of DCT apps varied widely, influenced by factors like socioeconomic status (SES), education, trust in authorities, and perceptions of privacy and surveillance. Higher SES, education levels, and trust in authorities positively correlated with app adoption and adherence. * **Government Mandated Restrictions:** Misinformation, fear of social repercussions, and challenges in synthesizing traditional and biomedical discourses often led to resistance to pandemic restrictions. Adaptive responses within communities, leveraging traditional practices alongside biomedical approaches, demonstrated community resilience and successful engagement for better public health outcomes. * **Knowledge, Attitudes, and Practices (KAP):** An evaluation of societal awareness of KAP factors showed that increased knowledge led to better adherence to public health measures. The review highlighted the benefits of PPI in mobilizing community efforts, addressing the needs of vulnerable populations, improving weak healthcare systems, and countering misinformation. The importance of community engagement in designing effective public health interventions was underscored. However, challenges included issues of trust in government, cultural resistance, misinformation, and weak health systems. Furthermore, inconsistent reporting of PPI methods and lack of consistent engagement across all processes were identified.

The umbrella review demonstrates the value of PPI in generating valuable perspectives and informing effective COVID-19 responses. However, a significant limitation is the small number of included systematic reviews, potentially reflecting a broader gap in the literature. This limitation underscores the need for more research to thoroughly investigate PPI's role in various aspects of pandemic response. The findings highlight the diverse approaches to PPI, ranging from formal collaboration to informal community-based initiatives. While the studies suggest benefits of PPI, they also reveal inconsistencies in engagement and reporting. Future research should focus on developing standardized methodologies for implementing and reporting PPI to improve the consistency and replicability of studies. The identified challenges, particularly those related to trust in government and the spread of misinformation, highlight the crucial role of building strong community partnerships and clear, culturally sensitive communication strategies.

This umbrella review highlights the limited but valuable existing evidence on PPI in COVID-19 health research and its implications for PHM. While the reviewed studies suggest benefits of PPI in mobilizing efforts and adapting to community needs, inconsistencies in engagement and reporting remain. Future research should focus on consistent PPI implementation, standardized reporting, and culturally competent engagement to guide effective PHM strategies, prioritizing community-specific and equity-focused approaches. Policymakers should integrate community-based organizations and volunteers into PHM development and implementation, respecting privacy concerns and leveraging digital technologies responsibly for data collection and shared decision-making.

The primary limitation is the small number of studies included in the umbrella review (n=6), possibly due to systematic errors or omission of relevant studies. This restricted the depth of analysis and may not fully capture the range of PPI strategies employed during the pandemic. The reliance on existing systematic reviews as the primary source of data introduces an inherent limitation, as findings are constrained by the scope and quality of the included reviews. Additionally, a single round of appraisal and data extraction might have introduced bias. The focus on studies published in English also limits the inclusion of relevant research from non-English speaking regions.