how can community engagement in health research be strengthened for infectious disease CORD-Papers-2022-06-02 (Version 1)

Title: How can community engagement in health research be strengthened for infectious disease outbreaks in Sub-Saharan Africa? A scoping review of the literature
Abstract: BACKGROUND: Community engagement (CE) is a well-established practical and scholarly field recognised as core to the science and ethics of health research for which researchers and practitioners have increasingly asked questions about desired standards and evaluation. In infectious disease outbreak contexts questions may be more complex. However it is unclear what body of knowledge has been developed for CE specifically as it applies to emerging infectious diseases. This scoping review seeks to describe (1) How CE has been conceptualised and understood; and (2) What conclusions have research teams reached on the effectiveness of CE in these settings including challenges and facilitators. METHODS: We used a scoping review framework by Arksey and OMalley (Int J Soc Res Methodol 8:1932 2005) to structure our review. We conducted a brainstorming session and initial trial search to inform the protocol search terms and strategy. Three researchers discussed developed and applied agreed screening tools and selection criteria to the final search results. Five researchers used the screening tools to screen abstracts and full text for inclusion by consensus. Additional publications were sought from references of retrieved publications and an expert call for literature. We analysed and reported emerging themes qualitatively. RESULTS: We included 59 papers from a total of 722 articles derived from our trial and final literature searches as well as a process of citation chasing and an expert call for grey literature. The core material related exclusively to health research trials during the 20142016 West Africa Ebola outbreak. We synthesized reports on components of effectiveness of CE to identify and propose three themes as essential elements of effective CE. CONCLUSIONS: While there is a large volume of literature documenting CE activities in infectious disease research settings generally there are few accounts of effectiveness dimensions of CE. Our review proposes three themes to facilitate the effectiveness of CE initiatives as essential elements of CE activities in infectious diseases studies: (1) Communication towards building collaborative relationships; (2) Producing contextual knowledge; and (3) Learning lessons over time. As there were relatively few in-depth accounts of CE from our literature review documentation and accounts of CE used in health research should be prioritised. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12889-021-10348-0.
Published: 2021-04-01
Journal: BMC Public Health
DOI: 10.1186/s12889-021-10348-0
DOI_URL: http://doi.org/10.1186/s12889-021-10348-0
Author Name: Vanderslott Samantha
Author link: https://covid19-data.nist.gov/pid/rest/local/author/vanderslott_samantha
Author Name: Van Ryneveld Manya
Author link: https://covid19-data.nist.gov/pid/rest/local/author/van_ryneveld_manya
Author Name: Marchant Mark
Author link: https://covid19-data.nist.gov/pid/rest/local/author/marchant_mark
Author Name: Lees Shelley
Author link: https://covid19-data.nist.gov/pid/rest/local/author/lees_shelley
Author Name: Nolna Sylvie Kwedi
Author link: https://covid19-data.nist.gov/pid/rest/local/author/nolna_sylvie_kwedi
Author Name: Marsh Vicki
Author link: https://covid19-data.nist.gov/pid/rest/local/author/marsh_vicki
sha: 62b79f52a20c40b71e801d4370587a37da66570e
license: cc-by
license_url: https://creativecommons.org/licenses/by/4.0/
source_x: Medline; PMC
source_x_url: https://www.medline.com/https://www.ncbi.nlm.nih.gov/pubmed/
pubmed_id: 33794820
pubmed_id_url: https://www.ncbi.nlm.nih.gov/pubmed/33794820
pmcid: PMC8012744
pmcid_url: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8012744
url: https://www.ncbi.nlm.nih.gov/pubmed/33794820/ https://doi.org/10.1186/s12889-021-10348-0
has_full_text: TRUE
Keywords Extracted from Text Content: body CE [19] [20] [21] [22] [23] [24] [25] [26] [27] [28] [29] [30] [31] [32] 2005 residents EBV qualitativethat friends left articles PREVAIL Fayia [29] researchnaïve area volunteer Senegal methodsparticularly Prospero CRD42018112501 GPP-EP CERqual PAG COVID-19 pillar patients convalescent plasma CHWs EBV Survivors body Liberia SMEs research-naïve Liberians patient research-driven leaves EBV donors Sierra Leone sections women EBOVAC-Salone CIDRAP CABs participants Salone Vindrola-Padros CE SK persons JIKI flyers survivors Americas MM people plasma English language Ebola Vaccines on-theground ALERRT 2019 Zika CE -'Community engagement'is line blood lesson-learning VM volunteers SV EVD survivors joint plasma donors human EVD state-ofthe-art' reports https://doi ALERRT 2019 Senegal. participants org/10.1186/s12889-021
Extracted Text Content in Record: First 5000 Characters:Background: Community engagement (CE) is a well-established practical and scholarly field, recognised as core to the science and ethics of health research, for which researchers and practitioners have increasingly asked questions about desired standards and evaluation. In infectious disease outbreak contexts, questions may be more complex. However, it is unclear what body of knowledge has been developed for CE specifically as it applies to emerging infectious diseases. This scoping review seeks to describe (1) How CE has been conceptualised and understood; and (2) What conclusions have research teams reached on the effectiveness of CE in these settings, including challenges and facilitators. Methods: We used a scoping review framework by Arksey and O'Malley (Int J Soc Res Methodol 8: [19] [20] [21] [22] [23] [24] [25] [26] [27] [28] [29] [30] [31] [32] 2005) to structure our review. We conducted a brainstorming session and initial trial search to inform the protocol, search terms, and strategy. Three researchers discussed, developed and applied agreed screening tools and selection criteria to the final search results. Five researchers used the screening tools to screen abstracts and full text for inclusion by consensus. Additional publications were sought from references of retrieved publications and an expert call for literature. We analysed and reported emerging themes qualitatively. Results: We included 59 papers from a total of 722 articles derived from our trial and final literature searches, as well as a process of "citation chasing" and an expert call for grey literature. The core material related exclusively to health research trials during the 2014-2016 West Africa Ebola outbreak. We synthesized reports on components of effectiveness of CE to identify and propose three themes as essential elements of effective CE. (Continued on next page) Conclusions: While there is a large volume of literature documenting CE activities in infectious disease research settings generally, there are few accounts of effectiveness dimensions of CE. Our review proposes three themes to facilitate the effectiveness of CE initiatives as essential elements of CE activities in infectious diseases studies: (1) Communication towards building collaborative relationships; (2) Producing contextual knowledge; and (3) Learning lessons over time. As there were relatively few in-depth accounts of CE from our literature review, documentation and accounts of CE used in health research should be prioritised. The Good Participatory Practice Guidelines for Trials of Emerging (and Re-emerging) Pathogens (GPP-EP) [57] set out recommendations for stakeholder engagement that draw from an expert base of actors involved in the EVD outbreak, and borrow from biomedical HIV intervention 'good participatory practice' trial guidelines (e.g. [53] ). The GPP-EP addresses key concepts in stakeholder engagement rather than community engagement, defining stakeholders, ethical issues, and the need for long-term, sustained partnerships. In this document, using the term 'stakeholder' rather than 'community' in discussing engagement as the focus implies a larger set of health research actors. Here 'synergy' between research and response is also seen as crucial to set out ethical principles and 'optimal practice' through nine activities throughout the research life-cycle [57] . The GPP-EP recommends processes to develop research protocols, budget allocation and time, and collaborative partnering for a "collective shaping of relevant, scientifically rigorous, ethical research that is in line with international standards, respects the rights of the involved population, contributes to and does not undermine the epidemic response, and leaves a sustaining legacy for the involved population" (ibid. p. 4). Effective engagement is both an intrinsic ethical imperative and has instrumental value toward enhancing trial conduct and contributing to robust research outcomes. While the window of opportunity for research during an outbreak is short, trial stakeholder identification and engagement is crucial. The foundational GPP-EP principles underpin partnerships with "respect, fairness, integrity, transparency, accountability, and autonomy, while the benchmarks include mutual understanding, complementarity, and efficiency" (ibid. p. 5). In addition to the World Health Organization (WHO) report, an ad hoc committee was formed at the National Academies of Sciences, Engineering, and Medicine to review and conduct an analysis of the clinical trials conducted during the 2014-2016 EVD outbreak. Their consensus report explores and analyses the scientific and ethical issues related to clinical trial design, conduct, and reporting. The report's second chapter focuses on "Conducting clinical research during an epidemic" [34] . The core recommendations include: i) begin CE early (recognising contingency of health research and the public health response); ii) ensure that CE is 'meaning
Keywords Extracted from PMC Text: Liberia patient CE – 'Community engagement' – volunteer 's CERqual patients Americas PREVAIL convalescent plasma volunteers Fayia [29] CABs lay EVD COVID-19 plasma English language people lesson-learning human Sierra Leone's flyers CHWs EBV Survivors PAG plasma donors ALERRT 2019 EVD survivors EBOVAC-Salone leaves SMEs Kambia (ibid. Salone activist-led human participants CIDRAP research-naïve joint blood body EBV donors Vaccines" researcher-led Vindrola-Padros GPP-EP JIKI EBV persons women's sections participants Sierra Leone " pillar Senegal vaccines" human immunodeficiency virus survivors CE line Zika
Extracted PMC Text Content in Record: First 5000 Characters:CE has become an ethical requirement for research involving human participants [52]. Dickert and Sugarman [19] have identified four ethical goals of CE: enhancing protection, enhancing benefits, creating legitimacy, and sharing responsibility. In the 2000s, there were significant developments in CE in clinical trials in Sub-Saharan Africa, especially human immunodeficiency virus (HIV) trials. These changes were motivated by the early closure of pre-exposure prophylaxis (PrEP) trials in Cambodia and Cameroon following protests led by HIV activists who argued trial participants were taking risks but not receiving enough benefits [41]. In response, activists called for a strengthened role of communities in the development and the conduct of HIV trials and pushed for a broader view of CE to promote community empowerment and shared decision-making [50]. Following these calls, there have been a number of successes in promoting dialogue with communities, especially the transformation from an activist-led movement that 'pushed' for inclusion, to a researcher-led effort, where study staff worked to encourage participation and 'pull' communities into relationships with researchers [38, 50]. Although there have been positive developments in CE, there are concerns that CE in clinical trials does not always address the broader concerns of participants, governments, activists, and researchers themselves, especially political and economic issues related to involving people from resource poor communities [43]. With the growing number of clinical trials around emerging diseases in the last five years, there have been further calls for improved CE, especially in emergency situations. The 2014–16 Ebola Virus Disease (EVD) outbreak in West Africa led to the deaths of more than 11,000 people in Sierra Leone, Liberia and Guinea [57]. Experiences during the response to the epidemic revealed to a broader community of scientists the dangers of ineffective CE, especially mistrust between communities and authorities [27]. In the wake of these experiences, a number of guidelines and reports were published for CE for clinical trials for emerging diseases [15]. The Good Participatory Practice Guidelines for Trials of Emerging (and Re-emerging) Pathogens (GPP-EP) [57] set out recommendations for stakeholder engagement that draw from an expert base of actors involved in the EVD outbreak, and borrow from biomedical HIV intervention 'good participatory practice' trial guidelines (e.g. [53]). The GPP-EP addresses key concepts in stakeholder engagement rather than community engagement, defining stakeholders, ethical issues, and the need for long-term, sustained partnerships. In this document, using the term 'stakeholder' rather than 'community' in discussing engagement as the focus implies a larger set of health research actors. Here 'synergy' between research and response is also seen as crucial to set out ethical principles and 'optimal practice' through nine activities throughout the research life-cycle [57]. The GPP-EP recommends processes to develop research protocols, budget allocation and time, and collaborative partnering for a "collective shaping of relevant, scientifically rigorous, ethical research that is in line with international standards, respects the rights of the involved population, contributes to and does not undermine the epidemic response, and leaves a sustaining legacy for the involved population" (ibid. p. 4). Effective engagement is both an intrinsic ethical imperative and has instrumental value toward enhancing trial conduct and contributing to robust research outcomes. While the window of opportunity for research during an outbreak is short, trial stakeholder identification and engagement is crucial. The foundational GPP-EP principles underpin partnerships with "respect, fairness, integrity, transparency, accountability, and autonomy, while the benchmarks include mutual understanding, complementarity, and efficiency" (ibid. p. 5). In addition to the World Health Organization (WHO) report, an ad hoc committee was formed at the National Academies of Sciences, Engineering, and Medicine to review and conduct an analysis of the clinical trials conducted during the 2014–2016 EVD outbreak. Their consensus report explores and analyses the scientific and ethical issues related to clinical trial design, conduct, and reporting. The report's second chapter focuses on "Conducting clinical research during an epidemic" [34]. The core recommendations include: i) begin CE early (recognising contingency of health research and the public health response); ii) ensure that CE is 'meaningful' (that is, that experiences are comprehensively and transparently reported and utilised); and iii) maintain sustained funding and investment to develop relationships in inter-epidemic periods. The report recognises the key role of social scientists or anthropologists in learning about cultural, social, political and historical dynamics that could aff
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