Costa Alencar Alexandre B, Selig Wendy K D, Geissler Jan, Bereczky Tamás, Ubide Alba, Haerry David, Stephens Richard, Behan Valerie
RTFCCR, Schaffhausen, Switzerland.
Rising Tide Foundation, WSCollaborative, McLean, USA.
Res Involv Engagem. 2023 Mar 1;9(1):6. doi: 10.1186/s40900-023-00410-z.
The role of patients in cancer research is undergoing a significant evolution as all stakeholders seek to enhance the level of direct patient involvement in the design and development of clinical trials. However, there are significant hurdles that patients, patient advocates, laboratory researchers, clinical investigators, and funding institutions must overcome to implement relevant patient involvement in all aspects of biomedical research. By using innovative grant funding models, philanthropic organizations can lead the field in overcoming these challenges. Rising Tide Foundation for Clinical Cancer Research (RTFCCR), a private philanthropy that funds academic research, has developed a novel approach for requiring and supporting partnerships among grantees and patients in designing and conducting research projects. This paper presents a reflective case study of efforts to advance the field of patient involvement in clinical research.
The decision to focus on patient involvement stems from an expressed focus area established by the RTFCCR board of directors. In conducting this work, RTFCCR partnered with Patvocates, a patient advocacy and engagement network, to create a set of guiding documents and resources aimed at public and private health research funders within various national, international, and therapeutic settings. This effort included a landscape assessment, interviews with experts, and an iterative development process.
To date, RTFCCR has completed and disseminated three guiding documents, one for funders, one for grant applicants, and one for patient advocates. These resources have already generated three major ongoing initiatives at RTFCCR: (1) inclusion of these recommendations in the foundation's funding guidelines; patient input to prioritization of research focus areas; and in topic selection for calls for proposals; (2) direct involvement of patient experts in the grant review process; and (3) a commitment to support high impact clinical research projects in Low- and Middle-Income Countries. Moreover, the foundation has launched a partnership with the International Cancer Research Partnership, the global alliance of cancer research organizations.
By using its grantmaking function and developing standardized approaches for implementation of patient involvement, RTFCCR is seeking to advance patient-centric cancer clinical research. This approach will continue to develop as it is implemented and shared with partners throughout the world.
随着所有利益相关者都在寻求提高患者直接参与临床试验设计与开发的程度，患者在癌症研究中的作用正在经历重大演变。然而，患者、患者权益倡导者、实验室研究人员、临床研究人员和资助机构在将相关患者参与落实到生物医学研究的各个方面时，必须克服重大障碍。通过采用创新的资助模式，慈善组织可以在克服这些挑战方面引领该领域。临床癌症研究涨潮基金会（RTFCCR）是一家为学术研究提供资金的私人慈善机构，它开发了一种新颖的方法，要求并支持受资助者与患者在设计和开展研究项目时建立伙伴关系。本文展示了一个旨在推动患者参与临床研究领域的反思性案例研究。
专注于患者参与的决定源于RTFCCR董事会确定的一个明确的重点领域。在开展这项工作时，RTFCCR与患者权益倡导与参与网络Patvocates合作，为不同国家、国际和治疗环境中的公共和私人健康研究资助者创建了一套指导文件和资源。这项工作包括态势评估、专家访谈以及一个反复迭代的开发过程。
迄今为止，RTFCCR已经完成并发布了三份指导文件，一份针对资助者，一份针对资助申请者，一份针对患者权益倡导者。这些资源已经在RTFCCR引发了三项主要的正在进行的倡议：（1）将这些建议纳入基金会的资助指南；患者参与研究重点领域的优先级确定以及提案征集的主题选择；（2）患者专家直接参与资助评审过程；（3）承诺支持低收入和中等收入国家的高影响力临床研究项目。此外，该基金会已与癌症研究组织全球联盟国际癌症研究伙伴关系建立了合作关系。
通过利用其资助职能并开发实施患者参与的标准化方法，RTFCCR正在寻求推进以患者为中心的癌症临床研究。这种方法在实施过程中以及与世界各地的合作伙伴分享时将不断发展。
