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1.
BMJ Open ; 14(5): e083830, 2024 May 30.
Article in English | MEDLINE | ID: mdl-38816060

ABSTRACT

INTRODUCTION: An organisation's ability to learn and adapt is key to its long-term performance and success. Although calls to improve learning within and across health organisations and systems have increased in recent years, global health is lagging behind other sectors in attention to learning, and applications of conceptual models for organisational learning to this field are needed. LEVERAGING THE 4I FRAMEWORK: This article proposes modifications to the 4I framework for organisational learning (which outlines the processes of intuition, interpretation, integration and institutionalisation) to guide the creation, retention and exchange of knowledge within and across global health organisations. PROPOSED EXPANSIONS: Two expansions are added to the framework to account for interorganisational learning in the highly interconnected field: (1) learning pathways across organisations via formal or informal partnerships and communities of practice and (2) learning pathways to and from macro-level 'coordinating bodies' (eg, WHO). Two additional processes are proposed by which interorganisational learning occurs: interaction across partnerships and communities of practice, and incorporation linking global health organisations to coordinating bodies. Organisational politics across partnerships, communities of practice and coordinating bodies play an important role in determining why some insights are institutionalised while others are not; as such, the roles of the episodic influence and systemic domination forms of power are considered in the proposed additional organisational learning processes. DISCUSSION: When lessons are not shared across partnerships, communities of practice or the research community more broadly, funding may continue to support global health studies and programmes that have already been proven ineffective, squandering research and healthcare resources that could have been invested elsewhere. The '6I' framework provides a basis for assessing and implementing organisational learning approaches in global health programming, and in health systems more broadly.


Subject(s)
Global Health , Learning , Humans , Delivery of Health Care/organization & administration , Models, Organizational
3.
Front Public Health ; 11: 1192676, 2023.
Article in English | MEDLINE | ID: mdl-37670826

ABSTRACT

Background: Vaccine hesitancy has hampered the control of COVID-19 and other vaccine-preventable diseases. Methods: We conducted a national internet-based, quasi-experimental study to evaluate COVID-19 vaccine informational videos. Participants received an informational animated video paired with the randomized assignment of (1) a credible source (differing race/ethnicity) and (2) sequencing of a personal narrative before or after the video addressing their primary vaccine concern. We examined viewing time and asked video evaluation questions to those who viewed the full video. Results: Among 14,235 participants, 2,422 (17.0%) viewed the full video. Those who viewed a personal story first (concern video second) were 10 times more likely to view the full video (p < 0.01). Respondent-provider race/ethnicity congruence was associated with increased odds of viewing the full video (aOR: 1.89, p < 0.01). Most viewers rated the informational video(s) to be helpful, easy to understand, trustworthy, and likely to impact others' vaccine decisions, with differences by demographics and also vaccine intentions and concerns. Conclusion: Using peer-delivered, personal narrative, and/or racially congruent credible sources to introduce and deliver vaccine safety information may improve the openness of vaccine message recipients to messages and engagement.


Subject(s)
COVID-19 Vaccines , COVID-19 , Humans , Ethnicity , Vaccination , Intention
4.
Science ; 380(6644): 460-462, 2023 05 05.
Article in English | MEDLINE | ID: mdl-37141365

ABSTRACT

Ethical analysis should encompass upstream decisions and their downstream consequences.


Subject(s)
COVID-19 Vaccines , COVID-19 , Health Equity , Humans , COVID-19/prevention & control , Bioethics
7.
PLoS One ; 17(10): e0274443, 2022.
Article in English | MEDLINE | ID: mdl-36219617

ABSTRACT

BACKGROUND: In response to reports of thrombosis with thrombocytopenia syndrome (TTS) post-vaccination, the Johnson & Johnson (J&J) vaccine was paused and then restarted in April 2021. Our objective was to assess whether this pause adversely impacted vaccine confidence. METHODS: Two large internet-based surveys were conducted in the US among adults to measure knowledge, attitudes and perceptions of the J&J vaccine pause and rates of vaccine hesitancy among unvaccinated persons before, during and after the pause. RESULTS: Among 66% of respondents aware of the pause, 44% identified blood clots as the reason for the pause without prompting. The impact of the pause on vaccine behavior among unvaccinated persons and perception of the vaccine safety system was mixed and modified by trust in the public health authorities. Those who were less willing to get vaccinated because of the pause were less inclined for all vaccines, not only the J&J product. Moreover, a notable proportion (22.1%) of the small number of persons (n = 30) vaccinated with the J&J vaccine after the pause reported not receiving information about the risk of TTS. The proportion of unvaccinated persons who were hesitant was increasing before and during the pause and then leveled off after the pause. CONCLUSIONS: The J&J vaccine pause is unlikely to be a major barrier to vaccine uptake. Public attitudes about vaccines may be more resilient than appreciated, especially when safety issues are investigated with transparent communication. This paper has important implications for messaging and program administration with future vaccine-specific adverse events. Efforts may be warranted to ensure all persons being offered the J&J vaccine are made aware of the risk of TTS.


Subject(s)
COVID-19 , Thrombocytopenia , Thrombosis , Vaccines , Ad26COVS1 , Adult , Health Knowledge, Attitudes, Practice , Humans , Parents , Thrombocytopenia/etiology , Thrombosis/etiology , Vaccination/adverse effects , Vaccination Hesitancy
8.
J Med Internet Res ; 24(7): e37920, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35709335

ABSTRACT

BACKGROUND: Accurate and timely COVID-19 vaccination coverage data are vital for informing targeted, effective messaging and outreach and identifying barriers to equitable health service access. However, gathering vaccination rate data is challenging, and efforts often result in information that is either limited in scope (eg, limited to administrative data) or delayed (impeding the ability to rapidly respond). The evaluation of innovative technologies and approaches that can assist in addressing these limitations globally are needed. OBJECTIVE: The objective of this survey study was to assess the validity of Random Domain Intercept Technology (RDIT; RIWI Corp) for tracking self-reported vaccination rates in real time at the US national and state levels. RDIT-a form of online intercept sampling-has the potential to address the limitations of current vaccination tracking systems by allowing for the measurement of additional data (eg, attitudinal data) and real-time, rapid data collection anywhere there is web access. METHODS: We used RDIT from June 30 to July 26, 2021, to reach a broad sample of US adult (aged ≥18 years) web users and asked questions related to COVID-19 vaccination. Self-reported vaccination status was used as the focus of this validation exercise. National- and state-level RDIT-based vaccination rates were compared to Centers for Disease Control and Prevention (CDC)-reported national and state vaccination rates. Johns Hopkins University's and Emory University's institutional review boards designated this project as public health practice to inform message development (not human subjects research). RESULTS: By using RDIT, 63,853 adult web users reported their vaccination status (6.2% of the entire 1,026,850 American web-using population that was exposed to the survey). At the national level, the RDIT-based estimate of adult COVID-19 vaccine coverage was slightly higher (44,524/63,853, 69.7%; 95% CI 69.4%-70.1%) than the CDC-reported estimate (67.9%) on July 15, 2021 (ie, midway through data collection; t63,852=10.06; P<.001). The RDIT-based and CDC-reported state-level estimates were strongly and positively correlated (r=0.90; P<.001). RDIT-based estimates were within 5 percentage points of the CDC's estimates for 29 states. CONCLUSIONS: This broad-reaching, real-time data stream may provide unique advantages for tracking the use of a range of vaccines and for the timely evaluation of vaccination interventions. Moreover, RDIT could be harnessed to rapidly assess demographic, attitudinal, and behavioral constructs that are not available in administrative data, which could allow for deeper insights into the real-time predictors of vaccine uptake-enabling targeted and timely interventions.


Subject(s)
COVID-19 , Vaccines , Adolescent , Adult , COVID-19/prevention & control , COVID-19 Vaccines/therapeutic use , Humans , Surveys and Questionnaires , Technology , United States , Vaccination
9.
PLoS One ; 17(4): e0267154, 2022.
Article in English | MEDLINE | ID: mdl-35446922

ABSTRACT

Various efforts to increase COVID-19 vaccination rates have been employed in the United States. We sought to rapidly investigate public reactions to these efforts to increase vaccination, including self-reported responses to widespread reduced masking behavior, monetary incentive programs to get vaccinated, and work vaccination requirements. Using a unique method for data collection (Random Domain Intercept Technology), we captured a large (N = 14,152), broad-based sample of the United States Web-using population (data collected from June 30 -July 26, 2021). About 3/4 of respondents reported being vaccinated. The likelihood of vaccination and vaccination intention differed across various demographic indicators (e.g., gender, age, income, political leaning). We observed mixed reactions to efforts aimed at increasing vaccination rates among unvaccinated respondents. While some reported that specific efforts would increase their likelihood of getting vaccinated (between 16% and 32%), others reported that efforts would decrease their likelihood of getting vaccinated (between 17% and 42%). Reactions differed by general vaccination intention, as well as other demographic indicators (e.g., race, education). Our results highlight the need to fully understand reactions to policy changes, programs, and mandates before they are communicated to the public and employed. Moreover, the results emphasize the importance of understanding how reactions differ across groups, as this information can assist in targeting intervention efforts and minimizing potentially differential negative impact.


Subject(s)
COVID-19 , SARS-CoV-2 , COVID-19/epidemiology , COVID-19/prevention & control , COVID-19 Vaccines , Humans , Intention , Masks , United States , Vaccination
10.
Hum Vaccin Immunother ; 18(1): 1917231, 2022 12 31.
Article in English | MEDLINE | ID: mdl-34010096

ABSTRACT

There is a high burden of human papillomavirus (HPV) associated cancers in low- and middle-income countries (LMICs). Reducing the recommended dosing schedule from two doses to one makes the vaccine schedule logistically simpler and lowers the cost. This could make the distribution of the current vaccine supply more equitable and lead to the protection of more people. However, the clinical trials studying the efficacy of a single-dose schedule have not yet delivered final results. Against this background, the question is whether a single-dose HPV vaccine recommendation is appropriate now, and if so, what are the ethical considerations of such a recommendation? We developed three ethical recommendations: (1) adopt a holistic view of evidence to justify policy decisions; (2) prioritize the reduction in global disparities in decision-making at all levels; and (3) be transparent in the reporting of how key stakeholder interests have shaped the collection and interpretation of the evidence, and ultimate decisions. The complex discussion regarding the HPV single-dose vaccine schedule highlights the need for in-depth engagement globally to improve our understanding of country-specific contexts, and how those contexts influence decisions regarding the HPV vaccine single-dose recommendation.


Subject(s)
Alphapapillomavirus , Papillomavirus Infections , Papillomavirus Vaccines , Uterine Cervical Neoplasms , Female , Humans , Immunization Schedule , Papillomaviridae , Papillomavirus Infections/prevention & control , Uterine Cervical Neoplasms/prevention & control
11.
Clin Trials ; 18(6): 681-689, 2021 12.
Article in English | MEDLINE | ID: mdl-34524048

ABSTRACT

Research in rapidly evolving policy contexts can lead to the following ethical challenges for sponsors and researchers: the study's standard of care can become different than what patients outside the study receive, there may be political or other pressure to move ahead with unproven interventions, and new findings or revised policies may decrease the relevance of ongoing studies. These ethical challenges are considerable, but not unprecedented. In this article, we review the case of a multinational, randomized, controlled perinatal HIV prevention trial, the "PROMISE" (Promoting Maternal Infant Survival Everywhere) study. PROMISE compared the relative efficacy and safety of interventions to prevent mother to child transmission of HIV. The sponsor engaged an independent international ethics panel to address controversy about the study's standard of care and relevance as national and international guidelines changed. This ethics panel concluded that continuing the PROMISE trial as designed was ethically permissible because: (1) participants in all arms received interventions that were effective, and there was insufficient evidence about whether one intervention was more effective or safer than the other, and (2) data from PROMISE could be useful for a diverse range of stakeholders. In general, trials designed to inform rapidly evolving policy issues should develop mechanisms to revisit social value while recognizing that the value of research varies for diverse stakeholders with legitimate reasons to weigh evidence differently. We conclude by providing four reasons that trials may depart from the standard of care after a change in policy, while remaining ethically justifiable, and by suggesting how to improve existing trial oversight mechanisms to address evolving social value.


Subject(s)
HIV Infections , Infectious Disease Transmission, Vertical , Child , Female , HIV Infections/prevention & control , Humans , Infectious Disease Transmission, Vertical/prevention & control , Policy , Pregnancy , Randomized Controlled Trials as Topic , Research Design
13.
Trans R Soc Trop Med Hyg ; 115(2): 190-195, 2021 01 28.
Article in English | MEDLINE | ID: mdl-33339025

ABSTRACT

The global movement to control and eliminate neglected tropical diseases (NTDs) is grounded in an ethic of social justice, solidarity and health equity. NTD programmes deliver significant health benefits in socially complex environments characterized by poverty and economic disparity. We used two ethics frameworks-principlism and Upshur's public health framework-to examine ethical challenges faced by NTD programmes. They include management of serious adverse reactions associated with preventive chemotherapy, centralization of decision-making, 'opt-out' policies for school-based deworming, incomplete evidence for 'pro-poor' impact and persistent inequities in global partnerships. NTD programmes must actively address ethical challenges while pursuing global health goals.


Subject(s)
Tropical Medicine , Global Health , Humans , Neglected Diseases/prevention & control , Public Health
15.
Rev Panam Salud Publica ; 44: e92, 2020.
Article in English | MEDLINE | ID: mdl-32774350

ABSTRACT

Community engagement is crucial for public health initiatives, yet it remains an under-studied process within national disease elimination programs. This report shares key lessons learned for community engagement practices during a malaria outbreak response in the Los Tres Brazos neighborhood of urban Santo Domingo, Dominican Republic from 2015-2016. In this two-year period, 233 cases of malaria were reported-more than seven times the number of cases (31) reported in the previous two years. The initial outbreak response by the national malaria program emphasized "top-down" interventions such as active surveillance, vector control, and educative talks within the community. Despite a transient reduction in reported cases in mid-2015, transmission resurged at the end of 2015. The program responded by introducing active roles for trained community members that included door-to-door fever screening, testing with rapid diagnostic tests and treatment. Malaria cases declined significantly throughout 2016 and community-based active surveillance infrastructure helped to detect and limit a small episode of transmission in 2017. Results from qualitative research among community members revealed two key factors that facilitated their cooperation with community-based surveillance activities: motivation to help one's community; and trust among stakeholders (community health workers, their neighbors and other key figures in the community, and malaria program staff and leadership). This experience suggests that community-led interventions and the program's willingness to learn and adapt under changing circumstances can help control malaria transmission and pave the way for elimination.


La participación de la comunidad es crucial para las iniciativas de salud pública, pero sigue siendo un proceso poco estudiado dentro de los programas nacionales de eliminación de enfermedades. En este informe se presentan las principales lecciones aprendidas respecto de las prácticas de participación comunitaria durante la respuesta al brote de malaria en el barrio Los Tres Brazos de la zona urbana de Santo Domingo, República Dominicana, de 2015 a 2016. En este período de dos años se notificaron 233 casos de malaria, más de siete veces el número de casos (31) notificados en los dos años anteriores. La respuesta inicial al brote por parte del programa nacional de malaria hizo hincapié en intervenciones "de arriba abajo" como la vigilancia activa, el control de vectores y las charlas educativas dentro de la comunidad. A pesar de la reducción transitoria de los casos notificados hacia mediados de 2015, la transmisión resurgió a finales de ese año. El programa respondió introduciendo funciones activas para miembros de la comunidad capacitados que incluían la detección de fiebre de casa en casa, pruebas de diagnóstico rápido y tratamiento. Los casos de malaria disminuyeron significativamente durante 2016 y la infraestructura de vigilancia activa basada en la comunidad ayudó a detectar y contener un episodio pequeño de transmisión en 2017. Los resultados de la investigación cualitativa entre los miembros de la comunidad revelaron dos factores clave que facilitaron su cooperación con las actividades de vigilancia basadas en la comunidad: la motivación para ayudar a la propia comunidad y la confianza entre las partes interesadas (los trabajadores sanitarios de la comunidad, los vecinos y otros actores clave de la comunidad, y el personal y la dirección del programa de lucha contra la malaria). Esta experiencia indica que las intervenciones dirigidas por la comunidad y la voluntad del programa de aprender y adaptarse a las circunstancias cambiantes pueden ayudar a controlar la transmisión de la malaria y facilitar el camino para su eliminación.

16.
Article in English | PAHO-IRIS | ID: phr-52534

ABSTRACT

[ABSTRACT]. Community engagement is crucial for public health initiatives, yet it remains an under-studied process within national disease elimination programs. This report shares key lessons learned for community engagement practices during a malaria outbreak response in the Los Tres Brazos neighborhood of urban Santo Domingo, Dominican Republic from 2015-2016. In this two-year period, 233 cases of malaria were reported—more than seven times the number of cases (31) reported in the previous two years. The initial outbreak response by the national malaria program emphasized “top-down” interventions such as active surveillance, vector control, and educative talks within the community. Despite a transient reduction in reported cases in mid-2015, transmission resurged at the end of 2015. The program responded by introducing active roles for trained community members that included door-to-door fever screening, testing with rapid diagnostic tests and treatment. Malaria cases declined significantly throughout 2016 and community-based active surveillance infrastructure helped to detect and limit a small episode of transmission in 2017. Results from qualitative research among community members revealed two key factors that facilitated their cooperation with community-based surveillance activities: motivation to help one’s community; and trust among stakeholders (community health workers, their neighbors and other key figures in the community, and malaria program staff and leadership). This experience suggests that community-led interventions and the program’s willingness to learn and adapt under changing circumstances can help control malaria transmission and pave the way for elimination.


[RESUMEN]. La participación de la comunidad es crucial para las iniciativas de salud pública, pero sigue siendo un proceso poco estudiado dentro de los programas nacionales de eliminación de enfermedades. En este informe se presentan las principales lecciones aprendidas respecto de las prácticas de participación comunitaria durante la respuesta al brote de malaria en el barrio Los Tres Brazos de la zona urbana de Santo Domingo, República Dominicana, de 2015 a 2016. En este período de dos años se notificaron 233 casos de malaria, más de siete veces el número de casos (31) notificados en los dos años anteriores. La respuesta inicial al brote por parte del programa nacional de malaria hizo hincapié en intervenciones "de arriba abajo" como la vigilancia activa, el control de vectores y las charlas educativas dentro de la comunidad. A pesar de la reducción transitoria de los casos notificados hacia mediados de 2015, la transmisión resurgió a finales de ese año. El programa respondió introduciendo funciones activas para miembros de la comunidad capacitados que incluían la detección de fiebre de casa en casa, pruebas de diagnóstico rápido y tratamiento. Los casos de malaria disminuyeron significativamente durante 2016 y la infraestructura de vigilancia activa basada en la comunidad ayudó a detectar y contener un episodio pequeño de transmisión en 2017. Los resultados de la investigación cualitativa entre los miembros de la comunidad revelaron dos factores clave que facilitaron su cooperación con las actividades de vigilancia basadas en la comunidad: la motivación para ayudar a la propia comunidad y la confianza entre las partes interesadas (los trabajadores sanitarios de la comunidad, los vecinos y otros actores clave de la comunidad, y el personal y la dirección del programa de lucha contra la malaria). Esta experiencia indica que las intervenciones dirigidas por la comunidad y la voluntad del programa de aprender y adaptarse a las circunstancias cambiantes pueden ayudar a controlar la transmisión de la malaria y facilitar el camino para su eliminación.


Subject(s)
Malaria , Community-Institutional Relations , Community Participation , Disease Eradication , Dominican Republic , Community-Institutional Relations , Community Participation , Disease Eradication , Dominican Republic
17.
PLoS Negl Trop Dis ; 14(5): e0008318, 2020 05.
Article in English | MEDLINE | ID: mdl-32469860

ABSTRACT

The World Health Organization (WHO) defines an effective round of mass drug administration (MDA) for lymphatic filariasis (LF) as one that reaches at least 65% of the target population. In its first round of MDA in 2011-2012, the National Program to Eliminate LF in Haiti achieved a 79% epidemiological coverage in urban Port-au-Prince. In 2013, coverage dropped below the WHO threshold and has declined year-over-year to a low of 41% in 2017. We conducted a retrospective qualitative case study to identify key factors behind the decline in coverage in Port-au-Prince and ways to address them. Our findings suggest that the main contributors to the decline in MDA coverage appear to be the absence of effective documentation of practices, reporting, analysis, and program quality improvement-i.e., learning mechanisms-within the program's MDA design and implementation strategy. In addition to their contribution to the program's failure to meet its coverage targets, these deficits have resulted in a high cost for the MDA campaign in both lost momentum and depleted morale. Through a proposed operating logic model, we explore how the pathway from program inputs to outcomes is influenced by a wide array of mediating factors, which shape potential participants' experience of MDA and, in turn, influence their reasoning and decisions to take, or not take, the pills. Our model suggests that the decisions and behavior of individuals are a reflection of their overall experience of the program itself, mediated through a host of contextual factors, and not simply the expression of a fixed choice or preference. This holistic approach offers a novel and potentially valuable framing for the planning and evaluation of MDA strategies for LF and other diseases, and may be applicable in a variety of global health programs.


Subject(s)
Delivery of Health Care/organization & administration , Disease Transmission, Infectious/prevention & control , Drug Utilization/statistics & numerical data , Elephantiasis, Filarial/drug therapy , Elephantiasis, Filarial/prevention & control , Filaricides/administration & dosage , Mass Drug Administration/methods , Haiti , Health Services Research , Humans , Treatment Outcome
18.
Am J Trop Med Hyg ; 102(2s): 3-24, 2020 02.
Article in English | MEDLINE | ID: mdl-31971144

ABSTRACT

In the context of stalling progress against malaria, resistance of mosquitoes to insecticides, and residual transmission, mass drug administration (MDA) of ivermectin, an endectocide used for neglected tropical diseases (NTDs), has emerged as a promising complementary vector control method. Ivermectin reduces the life span of Anopheles mosquitoes that feed on treated humans and/or livestock, potentially decreasing malaria parasite transmission when administered at the community level. Following the publication by WHO of the preferred product characteristics for endectocides as vector control tools, this roadmap provides a comprehensive view of processes needed to make ivermectin available as a vector control tool by 2024 with a completely novel mechanism of action. The roadmap covers various aspects, which include 1) the definition of optimal dosage/regimens for ivermectin MDA in both humans and livestock, 2) the risk of resistance to the drug and environmental impact, 3) ethical issues, 4) political and community engagement, 5) translation of evidence into policy, and 6) operational aspects of large-scale deployment of the drug, all in the context of a drug given as a prevention tool acting at the community level. The roadmap reflects the insights of a multidisciplinary group of global health experts who worked together to elucidate the path to inclusion of ivermectin in the toolbox against malaria, to address residual transmission, counteract insecticide resistance, and contribute to the end of this deadly disease.


Subject(s)
Antiparasitic Agents/pharmacology , Insecticides/pharmacology , Ivermectin/pharmacology , Malaria/prevention & control , Mosquito Vectors/drug effects , Africa , Animals , Antiparasitic Agents/therapeutic use , Endemic Diseases/prevention & control , Humans , Insecticides/therapeutic use , Ivermectin/therapeutic use , Lethal Dose 50 , Malaria/drug therapy , Malaria/transmission , Mass Drug Administration , Safety , Spain , World Health Organization
19.
Wellcome Open Res ; 5: 1, 2020.
Article in English | MEDLINE | ID: mdl-34632082

ABSTRACT

In this research note we reflect on our failed attempt to synthesize the community engagement literature through a standard systematic review and explain our rationale for now embarking on a realist synthesis of community engagement in global health research. We believe this paper will be helpful for many who grapple with the lack of clarity about community engagement's core elements and mechanisms.

20.
Wellcome Open Res ; 4: 87, 2019.
Article in English | MEDLINE | ID: mdl-31289754

ABSTRACT

Introduction: Community engagement is increasingly recognized as a critical aspect of global health. Recent years have seen an expansion of community engagement activities linked to health research, but debates and inconsistencies remain about the aims of different types of engagement, mechanisms underpinning their implementation and impact, and influential contextual factors. Greater commitment to and consistency around community engagement by health research programs, implementers and funders requires a more coherent evidence base. This realist review is designed to improve our understanding of how and why community engagement contributes to intended and unintended outcomes (including research and ethical outcomes) in different contexts. Given the breadth and diversity of the literature on community engagement in health research, the review will initially focus on malaria research in low- and middle-income countries (LMICs) and draw on wider global health literature where needed. Methods and analysis: Community engagement in practice is often a complex set of interventions. We will conduct a realist review - a theory driven approach to evidence synthesis - to provide explanations for how and why community engagement with health research produces the pattern of outcomes observed across different contexts of application. We will consolidate evidence from a range of documents, including qualitative, quantitative and mixed method studies. The review will follow several stages: devising an initial programme theory, searching evidence, selecting appropriate documents, extracting data, synthesizing and refining the programme theory, and reiteration of these steps as needed. Ethics and dissemination: A formal ethics review is not required for this literature review.  Findings will be disseminated in a peer reviewed journal, through national and international conferences, and through a set of short briefings tailored for audiences with an interest in community engagement. Outputs and presentations will be informed by and feed into our network of community engagement experts. PROSPERO registration number: CRD42019125687.

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