COVID-19 Public Health Measures and Patient and Public Involvement in Health and Social Care Research: An Umbrella Review

Over the past decade, there has been an increased emphasis on the importance of patient and public involvement (PPI) in health and social research as it provides alternative views and insights into the needs of healthcare users to improve the quality and relevance of research. PPI integration into health and social care research gained momentum before the COVID-19 pandemic. However, the rapid response to the pandemic resulted in PPI being viewed as non-essential, leading to its minimal inclusion in research and thereby minimizing the contribution of patients, the public, and particularly minority groups in helping find solutions to the pandemic crisis. PPI refers to conducting research with or by the public rather than to, about, or for them, encompassing patients, potential patients, caregivers, users of health and social care services and their representatives. PPI fosters active partnerships among patients, providers, public members, and researchers to influence and shape research in relevant and inclusive ways. Evidence shows PPI positively impacts all research stages, from formulating user-focused objectives to improving recruitment, interpreting data, and disseminating results. While multiple countries and networks (e.g., NIHR in the UK; initiatives across Europe, Canada, the US, Australia, and Ireland) have embedded PPI in publicly funded research, reporting on PPI processes and impacts remains inconsistent and often lacks contextual detail. This undermines appraisal and synthesis efforts and raises ethical concerns regarding transparent reporting. During the pandemic, the proliferation of COVID-19 systematic reviews, many poorly reported and not replicable, further complicated evidence use. Public health measures (PHM) aim to reduce transmission, severity, and mortality, spanning behavioral, environmental, social, systems, and pharmaceutical interventions. During COVID-19, PHM included lockdowns, contact management, isolation/quarantine, hand hygiene, masking, and more. PPI can enhance PHM by ensuring user-centered problem framing, equitable inclusion of diverse communities, and avoiding exacerbation of inequities, particularly among marginalized groups with limited resources. This umbrella review aimed to determine and describe the nature and extent of PPI in COVID-19 health and social care research and to identify gaps to inform future studies and funding priorities. Research questions followed a PICo framework to assess whether systematic reviews of PHM reported PPI activities, what these activities were and who was left out, and similarities/differences in PHM effectiveness across reviews.

The umbrella review synthesized six systematic reviews published in 2021 addressing PPI/PHM in COVID-19 contexts: (1) Adebisi et al. reviewed risk communication and community engagement (RCCE) strategies in 13 African countries, highlighting common approaches (coordination, training, public communication, infodemic management) and challenges (distrust, weak health systems, misinformation, exclusion of vulnerable groups). (2) Banerjee et al. assessed COVID-19 mortality risk tools, documenting limited PPI in tool development despite sustained public interest and feasibility of an online portal informed by PPI. (3) Ernawati et al. synthesized community knowledge, attitudes, and practices (KAP) for COVID-19 prevention, finding knowledge and attitudes correlated with preventive behaviors. (4) Mao et al. examined UK COVID-19 volunteering, noting diverse models (formal, social action, neighborhood support), key enablers (social trust, local knowledge), and coordination gaps with institutions. (5) Pegollo et al. reviewed population acceptance/determinants of digital contact tracing (DCT), identifying variability in uptake, declining adherence over time, and concerns about privacy, trust, accessibility, and digital divide. (6) Raymond & Ward synthesized qualitative/ethnographic studies in low- and middle-income countries, showing community resilience via adaptive leadership, local engagement, and integration of traditional and biomedical practices, while misinformation and stigma impeded compliance. Collectively, existing evidence on PPI during COVID-19 is heterogeneous and inconsistently reported, with notable gaps in equity-focused engagement and systematic documentation of PPI processes and impacts.

Design: Umbrella review (review of systematic reviews/meta-analyses) following the JBI Manual for Evidence Synthesis for umbrella reviews and PRISMA-ScR checklist. Protocol registered with PROSPERO (CRD42022307608). Search strategy: Using PICo (Population: general public; Phenomena of interest: PPI; Context: COVID-19/PHM), a public health librarian developed keywords, synonyms, and controlled vocabulary for PPI, PHM, and COVID-19. A National Library of Medicine systematic review filter was adapted. A three-step approach included preliminary scoping searches; comprehensive database searches; and citation chasing via Google Scholar. Databases: 3iE Database, BMC Systematic Reviews, Campbell Collaboration, Centre for Reviews and Dissemination, Cochrane Library, JBI Evidence Synthesis, PROSPERO, Google Scholar; and nine databases (EBSCO interface—Academic Search Ultimate, APA PsycINFO, CINAHL, Family & Society Studies Worldwide, Health Source: Nursing/Academic Edition, MEDLINE; Epistemonikos; ScienceDirect; WHO COVID-19 Global Literature) on 21 January 2022. Limits: English, peer-reviewed, publication years 2020–2022. Inclusion criteria: Any type of literature review (systematic, rapid, integrative, scoping, narrative, meta-analyses) including studies with human participants of any age, gender, race/ethnicity; qualitative (e.g., grounded theory, ethnography), quantitative (experimental and observational), case series, case reports, and service development. Interventions/phenomena: PHM per WHO taxonomy; studies needed to include PPI (defined as research conducted with/by patients/public contributing to design, implementation, dissemination). All settings and geographies included. Exclusion: Non-systematic reviews and individual primary studies. Screening and selection: Ten trained graduate students (organized into five groups) independently screened titles/abstracts and full texts using predefined criteria in Rayyan; two reviewers per record with discrepancies resolved by discussion or third reviewer (N.F.). Methodological quality appraisal: Two reviewers independently assessed included reviews using the JBI Critical Appraisal Checklist for Systematic Reviews and Research Syntheses; risk of bias categorized as Low (0–3), Medium (4–6), High (7–11). All reviews retained regardless of quality. Data extraction: One reviewer extracted data using JBI Data Extraction Form for Reviews; a second reviewer verified; third reviewer adjudicated disagreements. Synthesis: Tabular comparison and narrative synthesis across included reviews.

- Search and inclusion: 1437 records identified; 706 duplicates removed; 731 titles/abstracts screened; 54 full texts reviewed; 6 systematic reviews met inclusion criteria. - Methodological quality: Three reviews with medium risk of bias; three with low risk. Publication bias generally not addressed. - Nature/extent of PPI: PPI during COVID-19 was varied and inconsistently reported. Forms of PPI included written feedback from patient/public panels, stakeholder consultations, working groups/task forces, user engagement in prototype portals, qualitative inputs (surveys, interviews, conversations), and community-led volunteering. - PHM tailoring: Evidence suggests PHM should be attuned to local sociocultural contexts; community-specific approaches and PPI are integral to shared decision-making. - Community knowledge/behavior (KAP): Knowledge positively associated with preventive behaviors (masking, hand hygiene, distancing). Older respondents showed better attitudes/behaviors; women more likely to perform infection control behaviors; higher education associated with healthier behaviors; unemployed had least healthy behaviors. - Digital contact tracing (DCT): Knowledge of DCT apps did not correlate with downloads; willingness to download varied widely across countries. Adoption ranged from 37.3% to 87%, while refusal/missed downloads ranged from 27.7% to 94.8%; adherence declined over time. Continued use was more likely among individuals with higher self-efficacy, perceived safety benefits, higher SES, more education, trust in authorities, frequent internet use, and greater adherence to other NPIs; men were more likely adopters in some studies. Privacy and trust concerns, rapid development, cybersecurity worries, social media influence, and poor government communication hindered uptake; education and transparent communication improved acceptance. - Volunteering/community support: In the UK, over 4000 local volunteer groups formed with up to three million participants; NHS recruited triple its target of volunteers. Community support groups adjusted activities to evolving needs; key enablers included social networks, local knowledge, and social trust. Sustainability challenges included bureaucratic onboarding in formal organizations and leadership gaps in grassroots groups. Positive models offered opt-out flexibility, recognition, trusted relationships, access to funds, and collaborative ties with local government. - Low- and middle-income countries: Adaptive leadership by local leaders, community-managed resource distribution, and engagement in contact tracing fostered cohesion and trust; misinformation and fear of social denouncement led to resistance, sanctions, and isolation. Integrating traditional and biomedical practices supported resilience and effective engagement. - Risk tools and public portals: Despite sustained public interest, there was little PPI in developing COVID-19 risk prediction tools and limited patient-centered mortality risk information for those with underlying conditions. A publicly accessible, PPI-informed online mortality information portal was feasible and useful for shared decision-making. - Challenges: Distrust in government, weak health systems, cultural/social/religious resistance, misinformation/infodemics, exclusion of vulnerable groups, digital divide limiting access to DCT, constraints on in-person engagement, and inconsistent PPI reporting frameworks.

Involving patients and the public in research and PHM design during COVID-19 generated valuable, contextually relevant insights that improved community engagement, trust, and the usability of interventions. However, the evidence base revealed limited and inconsistently reported PPI across studies, with sporadic engagement and insufficient follow-up. Effective community engagement required strengthened local organizational support, sustained collaboration with volunteer and community-based groups, and equitable inclusion across geographies and populations. Equity-centered PPI can empower marginalized communities to develop tailored solutions, mitigate the spread of misinformation, and enhance trust and adherence to PHM. Digital tools enabled broader PPI but required robust privacy safeguards, clear communication, and efforts to bridge the digital divide. Overall, aligning PHM with local sociocultural contexts and embedding PPI in shared decision-making can enhance effectiveness and compliance during pandemics.

This umbrella review synthesizes evidence on PPI within COVID-19-related PHM and highlights heterogeneous and inconsistently reported practices. Key contributions include demonstrating that: (1) PHM are more effective when tailored to local sociocultural contexts with community-specific engagement; (2) PPI can mobilize volunteerism and community cohesion, supporting PHM implementation and adherence; (3) digital technologies can enable PPI in data collection and shared decision-making if privacy is respected and communication is transparent; and (4) substantial gaps remain in integrating PPI into decision-making processes, especially for high-risk populations and in the development of risk prediction tools. Future research should rigorously evaluate the effectiveness of PHM when culturally competent PPI is integrated into design and implementation, develop standardized PPI reporting, address equity by including marginalized groups, and assess sustainable models for partnering with community and volunteer organizations.

- Only six systematic reviews met inclusion criteria from 1437 records, risking omission of relevant evidence due to screening, appraisal, or extraction errors. - Findings rely on the reporting quality of included reviews; umbrella reviews cannot identify phenomena absent from the underlying systematic reviews. - Single-round appraisal and extraction may introduce bias. - Heterogeneity of contexts, interventions, and PPI reporting limited comparability and generalizability.