Exploring community engaged research experiences and preferences: a multi-level qualitative investigation

Han, Hae Ra; Xu, Ashley; Mendez, Kyra Jennifer Waligora; Okoye, Safiyyah; Cudjoe, Joycelyn; Bahouth, Mona N.; Reese, Melanie J.; Bone, Lee R.; Himmelfarb, Cheryl Dennison

doi:10.1186/s40900-021-00261-6

Cited by 44 publications

(38 citation statements)

References 23 publications

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“…Could this same principle also apply to community engagement? As Han 2021 has highlighted [ 11 ], this is an evolving area for community engagement. As part of the final phase of the Alliance work a formal evaluation of the CAG is planned.…”

Section: Discussionmentioning

confidence: 99%

“…Being engaged can increase overall genetic literacy as guidance is provided on implementation, transparency, and quality and trustworthiness of policies and service delivery programs [ 10 ]. At the same time, it is important to understand patients’ and communities’ experiences of engagement, both in research and in health service delivery [ 11 ].…”

Section: Introductionmentioning

confidence: 99%

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Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective

Wale¹,

Pietro

Renton³

et al. 2021

Res Involv Engagem

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Background The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Alliance was set up by its members in 2013 to steer the translation of genomics, making it an integral part of health care in Victoria, Australia. The Community Advisory Group (CAG) was formed soon after, to give input and advice across the program. This was to ensure consideration of community values, perspectives and priorities, and knowledge translation for patient care. The CAG was charged with providing a strong community voice for the duration of the program. Appointed members were experienced consumer advocates with developed connections to the community. Main body The Alliance progressed from an initial Demonstration Project (2013–2015) to a multifaceted program (2016–2020). The CAG worked strategically to help address complex issues, for example, communication, privacy, informed consent, ethics, patient experience, measurement and evaluation standards and policies, data storage and re-use of genomic data. Many aspects of translating genomics into routine care have been tackled, such as communicating with patients invited to have genomic testing, or their caregivers, and obtaining informed consent, clinical questions across 16 areas of health care, training and education of health and laboratory professionals, genomic data management and data-sharing. Evidence generated around clinical utility and cost-effectiveness led to government funding of testing for complex genetic conditions in children. Conclusion The CAG activities, recorded in a CAG-inspired Activity register, span the full spectrum of information sharing and consultation to co-design and partnership. The CAG were involved at multiple levels of participation and in all tiers of activity including governance, development of policies and procedures, program planning and evaluation. Working relationships were built up and a level of trust instilled to advance the Alliance work program in ensuring an effective patient-care model of delivery of genomics. CAG input into project deliverables has been tangible. Less tangible contributions included presentations at external meetings and conferences, direct interactions at meetings with Alliance members, interactions with visitors and external experts, taking part in consultations with experts, state and federal government.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective

Wale¹,

Pietro

Renton³

et al. 2021

Res Involv Engagem

View full text Add to dashboard Cite

show abstract

“…MOUs are a means of documenting and formalising the intentions and general expectations of all parties. Our research programme is strongly involved with and contributes to the Newcomer Research Network (NRN) at the University of Calgary 28. The NRN has signed an MOU with several organisations with whom we have been doing research, specifically ISPOs, which has been deemed useful both by the organisations and academics.…”

Section: From Engagement To Partnershipmentioning

confidence: 99%

“…Researchers often partner with organisations on research with immigrant/ethnic-minority communities; however, often the organisation’s role remains limited to providing access to community members for data collection through their community contacts or the partnership tends to be more confined for knowledge translation. While a truly community-engaged approach involving mutual connection, understanding and engagement among researchers and the community is ideal, most research does not involve this level of partnership 28. The belief is that researchers tend to commodify and capitalise research on immigrant/ethnic-minority populations rather than channel it towards actually improving or empowering communities.…”

Section: Partnership Learningsmentioning

confidence: 99%

Partnering with organisations beyond academia through strategic collaboration for research and mobilisation in immigrant/ethnic-minority communities

et al. 2022

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Community-engaged research needs involving community organisations as partners in research. Often, however, considerations regarding developing a meaningful partnership with community organisations are not highlighted. Researchers need to identify the most appropriate organisation with which to engage and their capacity to be involved. Researchers tend to involve organisations based on their connection to potential participants, which relationship often ends after achieving this objective. Further, the partner organisation may not have the capacity to contribute meaningfully to the research process. As such, it is the researchers’ responsibility to build capacity within their partner organisations to encourage more sustainable and meaningful community-engaged research. Organisations pertinent to immigrant/ethnic-minority communities fall into three sectors: public, private and non-profit. While public and private sectors play an important role in addressing issues among immigrant/ethnic-minority communities, their contribution as research partners may be limited. Involving the non-profit sector, which tends to be more accessible and utilitarian and includes both grassroots associations (GAs) and immigrant service providing organisations (ISPOs), is more likely to result in mutually beneficial research partnerships and enhanced community engagement. GAs tend to be deeply rooted within, and thus are often truly representative of, the community. As they may not fully understand their importance from a researcher’s perspective, nor have time for research, capacity-building activities are required to address these limitations. Additionally, ISPOs may have a different understanding of research and research priorities. Understanding the difference in perspectives and needs of these organisations, building trust and creating capacity building opportunities are important steps for researchers to consider towards building durable partnerships.

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“…17,18 CER has been widely recognized in research as imperative to reduce health disparities. 19-21 Use of CER within qualitative research can enhance translational results. Previous research has found that studies incorporating a CER approach has a positive impact on health behaviors including diet, exercise, and health outcomes (i.e.…”

mentioning

confidence: 99%

Developing a culturally tailored brain healthy diet intervention for older midwestern African Americans: A Qualitative and Quantitative Study

Shaw

Vidoni

Sullivan

et al. 2022

Preprint

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Background: Alzheimers disease and related dementia (ADRD) in the United States (U.S.) disproportionately affects African Americans (AA). Previous research has indicated that healthy eating habits help slow cognitive decline among adults 65 years and older. However, dietary intervention studies that demonstrated preliminary ability to protect against cognitive decline demonstrated low adherence and acceptability among African Americans. Objective: The objective of this study is to identify and understand knowledge and attitudes that influence dietary practices among older African Americans using a community-engaged approach. Design: A non-interventional mixed methods study designed to inform the development of an adapted brain-healthy soul food diet intervention. A purposive sampling approach was used to conduct 5 semi-structured focus group discussions and an online quantitative survey. The Health Belief Model guided the focus group using the following constructs: susceptibility, perceived severity, perceived benefits, perceived barriers, self-efficacy, and cue to action. Participants/setting: Inclusion criteria included self-identifying as African American or Black, aged 55 years and older, English proficient, and cognitively normal with an AD8 < 2. Participant were asked to participate in a single 60-minute virtual focus group discussion. In total, 39 individuals (25.6% men, 74.4% women) took part in one of the seven virtual focus group discussion (5-7 per focus group). Main outcome measure: Knowledge and attitudes that influence dietary practices among older African Americans. Statistical analysis performed: Focus groups were analyzed using a 6-step thematic analysis process, and quantitative survey data was analyzed using descriptive statistics. Results: Five themes emerged: Knowledge of dementia; practices shaping food choices and consumption; barriers impacting healthy dietary consumption; experiential instrumental support; and elements of a culturally tailored brain healthy dietary intervention. Conclusion: Older Midwesterners perceived an adapted MIND dietary model as most feasible with the incorporation of salient cultural characteristics and strategies within both the design and delivery phases.

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Exploring community engaged research experiences and preferences: a multi-level qualitative investigation

Cited by 44 publications

References 23 publications

Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective

Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective

Partnering with organisations beyond academia through strategic collaboration for research and mobilisation in immigrant/ethnic-minority communities

Developing a culturally tailored brain healthy diet intervention for older midwestern African Americans: A Qualitative and Quantitative Study

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