REPRESENT recommendations: improving inclusion and trust in cancer early detection research.
Journal
British journal of cancer
ISSN: 1532-1827
Titre abrégé: Br J Cancer
Pays: England
ID NLM: 0370635
Informations de publication
Date de publication:
10 2023
10 2023
Historique:
received:
20
01
2023
accepted:
21
08
2023
revised:
01
08
2023
medline:
23
10
2023
pubmed:
10
9
2023
entrez:
9
9
2023
Statut:
ppublish
Résumé
Detecting cancer early is essential to improving cancer outcomes. Minoritized groups remain underrepresented in early detection cancer research, which means that findings and interventions are not generalisable across the population, thus exacerbating disparities in cancer outcomes. In light of these challenges, this paper sets out twelve recommendations to build relations of trust and include minoritized groups in ED cancer research. The Recommendations were formulated by a range of stakeholders at the 2022 REPRESENT consensus-building workshop and are based on empirical data, including a systematic literature review and two ethnographic case studies in the US and the UK. The recommendations focus on: Long-term relationships that build trust; Sharing available resources; Inclusive and accessible communication; Harnessing community expertise; Unique risks and benefits; Compensation and support; Representative samples; Demographic data; Post-research support; Sharing results; Research training; Diversifying research teams. For each recommendation, the paper outlines the rationale, specifications for how different stakeholders may implement it, and advice for best practices. Instead of isolated recruitment, public involvement and engagement activities, the recommendations here aim to advance mutually beneficial and trusting relationships between researchers and research participants embedded in ED cancer research institutions.
Identifiants
pubmed: 37689805
doi: 10.1038/s41416-023-02414-8
pii: 10.1038/s41416-023-02414-8
pmc: PMC10575902
doi:
Types de publication
Systematic Review
Journal Article
Review
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1195-1208Subventions
Organisme : Cancer Research UK
ID : EICEDAAP\100011
Pays : United Kingdom
Informations de copyright
© 2023. The Author(s).
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