健康公平与临床试验

临床试验对话
英雄符号

在本月的临床试验对话中,我们采访了第三期CRC的幸存者Wenora Johnson,以阐明不同人群参加临床试验的众多障碍,以及社区如何共同应对这些挑战。

People who are underrepresented in health care are generally likely to also be underrepresented in clinical research. We recognize that 临床试验 are arguably the most important step to transition research into the real world, providing benefits across disease states, and improving health outcomes throughout various populations. 

从临床试验参与者的人口统计学来看,美国黑人约占18%,而拉丁裔/西班牙裔人口仅占试验参与者的6%。在近三分之二的临床试验中,原住民社区的代表性为零。尽管美国黑人和原住民与白种人相比,患结肠直肠癌(CRC)的风险较高,但我们仍然看到低注册人数。

Q: From your perspective, what do you see as the greatest barriers for diverse populations enrolling in clinical trials?

A: From my perspective, the greatest barriers include:

  • 对医疗系统/研究的不信任,可以追溯到塔斯基吉梅毒实验。
  • 担心他们会成为小白鼠,如果他们出了什么事,医生也不会在乎。
  • 缺乏获得医疗保健和设施的机会以及高质量的保险保障
  • 提供者对有色人种的看法(偏见和错误的看法)--例如,他们受教育程度较低,因此,不太可能遵守临床协议,以及假设有色人种不愿意参加临床试验,而不是问他们
  • 担心有色人种会得到安慰剂,而白人会得到真正的药物。
  • 缺乏关于临床试验的教育--有色人种需要了解更多关于临床试验的信息,以便他们能够做出明智的决定。

Q: When you were diagnosed with CRC, did you consider searching for clinical trials? What was your experience like?

A: I was diagnosed with stage IIIb CRC. While the standard treatment of care was surgery and six months of chemotherapy, I was very open to the idea of clinical trials. In fact, I did some research on the 临床试验网(ClinicalTrials.gov website to see what the latest options for CRC were in 2011. Since my standard treatment plan worked, and I’ve had no evidence of disease, I keep an open mind for clinical trials due to my Lynch Syndrome diagnosis. A recurrence of CRC can happen at any time and I want to be armed with the latest knowledge available.

Q: How do you use your expertise to help others find clinical trials?

A: One of the best opportunities I’ve had as a patient advocate is to be a curator for the Fight CRC Clinical Trial Finder. It served a dual purpose. It allowed me to better understand treatment options such as immunotherapy and also how genetics play an important role in treatment options and understanding tumor markers. It also helped me become a better spokesperson on clinical trials to people of color. This means helping others understand and dispel myths associated with clinical trials and guiding individuals to use trial finders like the Fight CRC 临床试验搜索器

Q: What can researchers, advocacy orgs and others in the cancer sphere do to reduce barriers and make it easier for minority communities to find and enroll in clinical trials?

A: Barriers can be reduced for minority communities by:

利用社交媒体、小册子和护士导航员提供有关临床试验过程的准确信息,帮助患者了解,并消除与临床试验有关的迷思。
在有关临床试验的广告中显示少数民族的代表性
解决语言障碍--翻译成其他语言 
在经济萧条地区提供临时诊所,让医护人员回答病人可能遇到的问题和/或担忧。
提供可能的财政奖励,帮助抵消与临床试验有关的费用。
确保为所有病人真正实现多样性、公平和包容。

寻找临床试验和注册的过程可能是令人生畏的。抗击癌症协会和COLONTOWN致力于提供资源和工具,帮助患者群体确定改善生活质量的最佳选择,并改善获得护理的机会。 

搏击中心与病人社区携手合作,通过解决这些问题来发现改善和延长生命的新方法。为使临床试验惠及其目标人群,必须增加参与者的种族和民族多样性。

请务必了解更多关于抗击癌症中心的临床试验工作和我们解决医疗保健差异的工作。

请继续关注更多信息!

Once a month, Maia and Manju will spend time unpacking important research trials, tips, and advice for our community. Be sure to subscribe to sign up with 打击CRC 并加入 COLONTOWN’s online community to continue receiving the most relevant updates in the CRC world!

你也可以关注Maia (@sassycell) 和 Manju (@manjuggm) to stay updated on research and trials and visit ClinicalTrials.gov for more information on trials.

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