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Improving Patient Advocacy in NCI Scientific Steering Committees and Task Forces
JNCI Journal of the National Cancer Institute Pub Date : 2022-05-06 , DOI: 10.1093/jnci/djac089
Rick Bangs 1 , Jean M Lynn 2 , Evelyn Obot 3 , Sherill Osborne 4 , Kim Norris 5
Affiliation  

Abstract This commentary discusses improving research advocacy as part of National Cancer Institute (NCI) clinical trial activities in scientific steering committees and task forces between 2016 and 2020. Before 2016, the focus of patient advocate input on clinical trial concept evaluation was assessing accrual feasibility. By leveraging informal benchmarking and an outside-in perspective, the NCI patient advocate steering committee, comprised of NCI scientific steering committee and task force advocates, has recalibrated research advocacy within and across its clinical trial concepts. Additionally, by focusing on research advocacy fundamentals, the NCI patient advocate steering committee clarified the scope of the research advocate roles, focused its mission, defined and developed competencies, measured engagement, and created collateral and processes that support better interactions and greater value generation. Continuous improvement in the collateral and the underlying approaches, along with calibrating their application and monitoring results, will be necessary to keep pace with the science and further enhance the value of cancer clinical trial research advocacy. The road ahead should build on these fundamentals and include increased emphasis on diversity, equity, and inclusion in clinical trial and research advocacy participants and the supporting infrastructure.

中文翻译:

改善 NCI 科学指导委员会和工作组中的患者权益

摘要本评论讨论了 2016 年至 2020 年间作为美国国家癌症研究所 (NCI) 科学指导委员会和工作组临床试验活动一部分的改进研究倡导工作。2016 年之前,患者倡导者对临床试验概念评估的关注重点是评估应计可行性。通过利用非正式基准和由外而内的视角,由 NCI 科学指导委员会和工作组倡导者组成的 NCI 患者倡导者指导委员会重新调整了其临床试验概念内部和跨领域的研究倡导。此外,通过关注研究倡导基础知识,NCI 患者倡导者指导委员会明确了研究倡导者角色的范围,聚焦其使命,定义和发展能力,衡量参与度,并创建支持更好互动和更大价值创造的抵押品和流程。为了跟上科学的步伐并进一步提高癌症临床试验研究倡导的价值,有必要不断改进附属方法和基础方法,并校准其应用和监测结果。未来的道路应建立在这些基础之上,包括更加重视临床试验和研究倡导参与者以及支持基础设施的多样性、公平性和包容性。
更新日期:2022-05-06
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