研究动态
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REPRESENT 推荐:提高癌症早期检测研究的包容性和信任度。

REPRESENT recommendations: improving inclusion and trust in cancer early detection research.

发表日期:2023 Sep 09
作者: Frederike Brockhoven, Maya Raphael, Jessica Currier, Christina Jäderholm, Perveez Mody, Jackilen Shannon, Bella Starling, Hannah Turner-Uaandja, Nora Pashayan, Ignacia Arteaga
来源: BRITISH JOURNAL OF CANCER

摘要:

早期检测癌症对改善癌症结果至关重要。少数族裔群体在早期检测癌症研究中仍然少数,这意味着发现和干预不能推广到整个人群,从而加剧了癌症结果的差异。鉴于这些挑战,本文提出了十二项建议,以建立信任关系并在早期癌症研究中纳入少数族裔群体。这些建议是由2022年REPRESENT共识建立研讨会上的各方利益相关者制定的,基于实证数据,包括针对美国和英国的两个民族志案例研究和系统文献综述。这些建议侧重于:建立长期信任关系;分享可用资源;包容和可接近的沟通;发挥社区专业知识;唯一的风险和利益;补偿和支持;代表性样本;人口统计数据;研究后支持;分享结果;研究培训;多元化研究团队。对于每一个建议,本文概述了其基本原理,不同利益相关者可能如何实施它,以及最佳实践的建议。与孤立的招募、公众参与和交流活动不同,这里的建议旨在推进研究者和研究参与者之间相互受益、建立互信的关系,并将其嵌入到早期癌症研究机构中。 © 2023. 作者。
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.© 2023. The Author(s).