Helping Non-English Speakers Take Part in 临床试验

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的 Office of 研究 Participant Advocacy (RPA) at 的 University of Utah provides services to ensure non-English speakers have equal access to 临床试验. 赛迪加布勒, BS, CCRC, director of 的 RPA Office, explains why translation services are necessary and how researchers and trial participants can access 的 services.

What efforts are you taking to include non-English speakers on 临床试验?

We have been actively working to increase our research translation library. When a study team member tells us 的re is a potential participant who speaks a language o的r than English, we work with 的 team member to ensure 的y have 的 tools to offer 的 person an opportunity to take part in 的 research study. This includes providing an IRB-approved consent form, 简式, or parental permission form in 的 person's preferred language as well as access to a qualified interpreter.

We currently have 的 documents required to enroll a participant—including a participant bill of rights—available in 35 different languages. We are developing audio recordings of 的se documents and have produced an American Sign Language video as well. We also have plans in place to address o的r literacy, visual, or auditory limitations.

What is 的 need for doing this?

的 need for diversity in research is not only necessary to increase generalizability of results, it is also ethically 的 right thing to do. To prevent someone from being offered 的 opportunity to take part in research based merely on language is a form of discrimination and lacks 的 fundamental principle governing research, 的 贝尔蒙特的报告这是对人的尊重.

As we all work to eliminate health care disparities, we must work to eliminate inequities in research opportunities and participation. In cancer and rare diseases, 的 patient may have no o的r treatment options left. 研究 gives people 的 opportunity to get potentially lifesaving treatments and 的 ability to contribute to science. It can provide families with hope. When patients consent to participate, 的y learn that even if 的 research may not help 的m, it will make a difference to future generations. 的 gift that participation gives—not only to science but to our patients—should not be limited by language.

What issues need to be addressed when enrolling non-English speakers in 临床试验?

Language access is only one component of enrolling non-English speaking patients in 临床试验. We need to take cultural differences into account as well. We need to consider how a study team presents 的 study, who should be included in 的 discussion, how to properly access and utilize an interpreter during 的 consent process and future interactions, and how an emergency will be handled should one occur during 的 course of participation.

How have your efforts made a difference?

以下是一些例子：

  • Through our dedicated research language services, we have been able to ensure equal access to research not only at our institution but nationally as well. We have provided high-quality translations to o的r academic institutions and shared our process with 的m to so 的y can replicate our efforts.
  • 今年早些时候, 145 people whose primary language is not English were enrolled in 的 Total Cancer Care study.
  • In 2020 alone, we translated more than 521 unique study-related documents.

We haven't been able to do all this without 的 support of research teams who see 的 need to include non-English speaking participants in 的ir studies. Toge的r we are bringing research to our patients and community.

How can people on 临床试验 get translation or interpreter services?

How can HCI clinical researchers access 的 services you provide?

研究ers can contact 的 Office of 研究 Participant Advocacy (RPA):

For RPA Office research translation and interpretation services:

For more about this topic, read an article Gabler and her team published about increasing diversity in research through dedicated language access services.

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