Community engagement in Genomics research; Challenges and lessons learnt in the AWI-Gen study at Dikgale Health and Demographic Surveillance System (HDSS) Site, South Africa

As health research often requires consent from participants and permission from community gate keepers, community engagement is considered an integral process of health research. Community engagement is also important in building trust between the research team and participants, gathering information on the needs and expectations of the community with respect to the project and present the community with an opportunity to gain more information on the goals of the research. Although there are published guidelines on how to conduct community engagement activities, the concept itself and the way in which it is put into practice is highly contextual. In this paper we reflect on the community engagement strategy used in the AWI-Gen Phase 1 study at the Dikgale Health and Demographic Surveillance System (Dikgale HDSS) site, the challenges encountered throughout the research process and the lessons learnt. Lastly, we highlight possible improvements to the CE strategic framework for AWI-Gen Phase 2 in Dikgale HDSS that may enhance the participation of the community.

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Health and Demographic Surveillance System Sites: Reflections on Global Health Research Ethics

Journal of Population and Social Studies ◽

10.25133/jpssv28n3.018 ◽

2020 ◽

Vol 28 (3) ◽

pp. 265-275

Author(s):

Tehmina Ghafur ◽

◽

Mohammad Mainul Islam ◽

Nazmul Alam ◽

Mohammad Sazzad Hasan ◽

...

Keyword(s):

Global Health ◽

Research Ethics ◽

Health Research ◽

Surveillance System ◽

Demographic Surveillance System ◽

Global Health Research

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ASSESSING POPULATION DYNAMICS IN A RURAL AFRICAN SOCIETY: THE NAVRONGO DEMOGRAPHIC SURVEILLANCE SYSTEM

Journal of Biosocial Science ◽

10.1017/s0021932099003752 ◽

1999 ◽

Vol 31 (3) ◽

pp. 375-391 ◽

Cited By ~ 37

Author(s):

FRED N. BINKA ◽

PIERRE NGOM ◽

JAMES F. PHILLIPS ◽

KUBAJE ADAZU ◽

BRUCE B. MacLEOD

Keyword(s):

Health Research ◽

Surveillance System ◽

Demographic Data ◽

Demographic Surveillance System ◽

Northern Ghana ◽

Research Centre ◽

High Fertility ◽

Demographic Research ◽

Individual Level ◽

The Impact

In 1993, the Navrongo Health Research Centre launched a new demographic research system for monitoring the impact of health service interventions in a rural district of northern Ghana. The Navrongo Demographic Surveillance System uses automated software generation procedures that greatly simplify the preparation of complex database management systems. This paper reviews the Navrongo model for data collection, as well as features of the Navrongo system that have led to its replication in other health research projects requiring individual-level longitudinal demographic data. Demographic research results for the first 2 years of system operation are indicative of a pretransitional rural society with high fertility, exceedingly high mortality risks, and pronounced seasonal out-migration.

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Evaluating Community Engagement Strategies to Manage Stigma in Two African Genomics Studies Involving People Living with Schizophrenia or Rheumatic Heart Disease

Global Health Epidemiology and Genomics ◽

10.1155/2021/9926495 ◽

2021 ◽

Vol 2021 ◽

pp. 1-9

Author(s):

Megan M. Campbell ◽

Olivia P. Matshabane ◽

Sibonile Mqulwana ◽

Michael Mndini ◽

Mohamed Nagdee ◽

...

Keyword(s):

Mental Health ◽

Heart Disease ◽

Community Engagement ◽

Health Research ◽

Research Study ◽

Rating Scale ◽

Evaluation Strategies ◽

Genomics Research ◽

Stigma Resistance ◽

Rheumatic Heart

In global health research and genomics research specifically, community engagement has gained prominence in enhancing ethical conduct, particularly in managing the risk of stigmatization, but there is minimal scientific evidence on how to do this effectively. This article reports on community engagement evaluation strategies in two African genomics studies: the Stigma in African Genomics Research study and the Genomics of Schizophrenia in South African Xhosa People (SAX) study. Within the Stigma in African Genomics Research study, a self-report rating scale and open-ended questions were used to track participant responses to an experiential theatre workshop. The workshop focused on participant experiences of living with schizophrenia or rheumatic heart disease (RHD). While the schizophrenia group reported more alienation and less stigma resistance than the RHD group, both groups demonstrated increased stigma resistance over time, after participating in the workshops. Hearing from others living with and managing the same illness normalised participants’ own experiences and encouraged them. Within the SAX study, a short rating scale and qualitative feedback methods were used to evaluate a Mental Health Literacy Day targeting mental health stigma. Information talks about (i) the symptoms of schizophrenia and treatment options and (ii) the illness experiences of a patient in recovery were rated as the most helpful on the day. Audience members reported that these talks challenged negative perceptions about severe mental illness. Three important learnings emerged from these evaluations: firstly, integration of evaluation strategies at the research study planning phase is likely to promote more effective community engagement. Secondly, a combination of quantitative and qualitative methods that draw on simple descriptive statistics and thematic analysis can provide nuanced perspectives about the value of community engagement. Thirdly, such evidence is necessary in establishing and promoting the science of community engagement in genomics research and health research more broadly.

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A systematic review of randomized trials for engaging socially disadvantaged groups in health research: A distillation approach

10.31234/osf.io/af4uj ◽

2019 ◽

Author(s):

Michael C Mullarkey ◽

Mallory Dobias ◽

Alyssa Maron ◽

Sarah Kate Bearman

Keyword(s):

Systematic Review ◽

Community Engagement ◽

Health Research ◽

Research Participation ◽

Research Process ◽

Targeted Interventions ◽

Research Engagement ◽

Disadvantaged Groups ◽

Socially Disadvantaged ◽

Engagement Interventions

Research that fails to include sufficient representation from socially disadvantaged groups cannot make strong inferences about those groups. This relative lack of knowledge poses theoretical and clinical problems for health research. More effective community engagement with socially disadvantaged groups is often proposed as a way to increase research engagement. However, community engagement is a heterogeneous construct, including everything from how participants are contacted to whether researchers work with an organization within the community. Further, community engagement efforts vary widely in their effectiveness in recruiting and retaining participants from socially disadvantaged groups. Therefore, some types of community engagement may be more effective than others. We conducted a systematic review of randomized controlled trials attempting to increase recruitment or retention of socially disadvantaged groups. We then applied systematic distillation procedures to examine which components of community engagement interventions were associated with successful recruitment or retention outcomes. Generally, we found research process related variables (e.g. having a systematic contact plan) most frequently differentiated effective vs. ineffective recruitment or retention outcomes. Partial associations between components in effective interventions, including negative associations, were descriptively stronger than partial associations in the ineffective interventions, indicating targeted interventions may be more effective than more generalized interventions. The literature was also relatively sparse and at unclear-to-high-risk for bias. Future pre-registered, research process-oriented, and targeted recruitment and retention interventions may increase the research participation of socially disadvantaged groups in health research.

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Are we walking the talk of participatory Indigenous health research? A scoping review of the literature in Atlantic Canada

PLoS ONE ◽

10.1371/journal.pone.0255265 ◽

2021 ◽

Vol 16 (7) ◽

pp. e0255265

Author(s):

Kathleen Murphy ◽

Karina Branje ◽

Tara White ◽

Ashlee Cunsolo ◽

Margot Latimer ◽

...

Keyword(s):

Community Engagement ◽

Participatory Research ◽

Scoping Review ◽

Health Research ◽

Indigenous Health ◽

Indigenous Communities ◽

Research Process ◽

Atlantic Canada ◽

Health Related ◽

Canada Data

Introduction Participatory research involving community engagement is considered the gold standard in Indigenous health research. However, it is sometimes unclear whether and how Indigenous communities are engaged in research that impacts them, and whether and how engagement is reported. Indigenous health research varies in its degree of community engagement from minimal involvement to being community-directed and led. Research led and directed by Indigenous communities can support reconciliation and reclamation in Canada and globally, however clearer reporting and understandings of community-led research is needed. This scoping review assesses (a) how and to what extent researchers are reporting community engagement in Indigenous health research in Atlantic Canada, and (b) what recommendations exist in the literature regarding participatory and community-led research. Methods Eleven databases were searched using keywords for Indigeneity, geographic regions, health, and Indigenous communities in Atlantic Canada between 2001-June 2020. Records were independently screened by two reviewers and were included if they were: peer-reviewed; written in English; health-related; and focused on Atlantic Canada. Data were extracted using a piloted data charting form, and a descriptive and thematic analysis was performed. 211 articles were retained for inclusion. Results Few empirical articles reported community engagement in all aspects of the research process. Most described incorporating community engagement at the project’s onset and/or during data collection; only a few articles explicitly identified as entirely community-directed or led. Results revealed a gap in reported capacity-building for both Indigenous communities and researchers, necessary for holistic community engagement. Also revealed was the need for funding bodies, ethics boards, and peer review processes to better facilitate participatory and community-led Indigenous health research. Conclusion As Indigenous communities continue reclaiming sovereignty over identities and territories, participatory research must involve substantive, agreed-upon involvement of Indigenous communities, with community-directed and led research as the ultimate goal.

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