Improving diversity in study participation: Patient perspectives on barriers, racial differences and the role of communities.
Improving diversity in study participation: Patient perspectives on barriers, racial differences and the role of communities.
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DOI：
10.1111/hex.13554
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发表时间：
2022-08
影响因子：
3.2
通讯作者：
Peters, Wesley
中科院分区：
文献类型：
--
作者：
Shea, Lisa;Pesa, Jacqueline;Geonnotti, Gabrielle;Powell, Valerie;Kahn, Caryl;Peters, Wesley
研究中缺乏种族/民族多样性可能会限制研究结果对更广泛人群的普遍性，突出表明临床研究需要更大的多样性和包容性。定性研究（即，焦点小组），以确定（i）不同种族和民族参与研究的潜在动机和障碍;（ii）首选的教育和信息提供，以支持医疗保健决策和社区的作用。患者焦点小组由通过主观抽样选择的来自申办者患者参与研究委员会的26名参与者组成。征聘工作优先考虑不同种族/族裔群体的适当代表性。参与是自愿的，参与者在选择之前经过了保密的面试过程。叙述分析被用来确定主题，并从互动中得出见解。经验丰富的研究专家确定了新出现的概念，并根据新的观察结果对这些概念进行了测试。每个概念的频率进行了检查，以了解其重要性。根据自选人种/种族，将参与者分为5个焦点组（组：非裔美国人/黑人：2人;西班牙裔/拉丁裔、亚裔美国人和白色人：各1人），并要求他们分享关于所述目标的经验/意见。参与研究的障碍包括：对参与研究机会的认识有限、对标准治疗变化的恐惧、打破文化规范/污名、宗教相关担忧和对临床研究的不信任。与会者指出，制药公司和其他实体必须提高透明度，以建立信任和伙伴关系，并列举了社区可以发挥的关键作用。非裔美国人群体对研究中的多样性/包容性的看法似乎与其他群体不同;对医疗保健提供者缺乏信任，对历史上滥用研究的情况感到关切，以及祈祷的重要性。这项研究提供了对研究参与障碍的见解，并强调了制药公司和其他实体真正参与在社区内建立信任的战略的必要性，以加强在不同人群中的招募。本研究中收集的数据由焦点小组的参与者提供。
The lack of racial/ethnic diversity in research potentially limits the generalizability of findings to a broader population, highlighting the need for greater diversity and inclusion in clinical research. Qualitative research (i.e., focus groups) was conducted to identify (i) the potential motivators and barriers to study participation across different races and ethnicities; (ii) preferred delivery of education and information to support healthcare decision‐making and the role of the community. Patient focus groups were conducted with 26 participants from the sponsor's Patient Engagement Research Councils selected through subjective sampling. Recruitment prioritized adequate representation across different race/ethnic groups. Participation was voluntary and participants underwent a confidential interview process before selection. Narrative analysis was used to identify themes and draw insights from interactions. Experienced research specialists identified emerging concepts, and these were tested against new observations. The frequency of each concept was examined to understand its importance. Based on self‐selected race/ethnicity, participants were divided into five focus groups (Groups: African American/Black: 2; Hispanic/Latino, Asian American, and white: 1 each) and were asked to share their experiences/opinions regarding the stated objectives. Barriers to study participation included: limited awareness of opportunities to participate in research, fears about changes in standard therapy, breaking cultural norms/stigma, religion‐related concerns and mistrust of clinical research. Participants identified the importance of transparency by pharmaceutical companies and other entities to build trust and partnership and cited key roles that communities can play. The perceptions of the African American group regarding diversity/inclusion in research studies appeared to be different from other groups; a lack of trust in healthcare providers, concerns about historical instances of research abuse and the importance of prayer were cited. This study provided insights into barriers to study participation, and also highlighted the need for pharmaceutical companies and other entities to authentically engage in strategies that build trust within communities to enhance recruitment among diverse populations. The data collected in the present study was provided by the participants in the focus groups.
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