[ Anglais] How Can Experts Overcome Language and Cultural Barriers to Increase Clinical Trial Participation?

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How are researchers helping to facilitate participation by minorities in clinical trials? Clinical trials expert Dr. Richard Schilsky, from the American Society of Clinical Oncology,discusses language and cultural barriers that inhibit access and methods to reduce them to include more diverse populations in trials. Patient advocate and the longest living #Gleevec survivor Mel Mann also shares why it’s critical for patients to research clinical trials and explore all of their treatment options. Tune in to find out more.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc., Astellas, Celgene Corporation, and Novartis for their support.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

So the requirements actually are that there must be a consent form, at least some reversion of which is translated into the first language of the patient.  So if you're a native Spanish speaker, a native Chinese speaker, you have to have, be able to see a consent form written in that language, and generally speaking you have to have your native language interpreter present in the room to help you go through the consent form and respond to your questions. And that person has to be someone who is independent from the research team so they can give you the straight answer and not be influenced by any member of the research team.  So I think all of that certainly helps.  

But, again, what helps a lot more is to have members of the care team who look like the patient.  So we have problems with diversity in our profession as well.  We have very few African-American oncologists.  We have more Spanish-speaking oncologists, but again we have few Asian oncologists.  So we need to do a better job of improving the diversity of our profession, improving the diversity of the care teams.  We need nursing staff and research staff and other people who work with our patients who represent them and gain their trust, who look like them, who talk their language.  And I think that will go a long way toward making people feel more comfortable about participating in clinical trials.  

So right now, where are we, Dr. Schilsky, with participation?  And why is it important?  In other words, in this age of personalized medicine why do we need more black people in certain trials?  Like, I know in multiple myeloma, one of the areas we cover, there's a higher incidence in the black population, right, but yet few black people are in the trials for myeloma drugs.  Or maybe there are differences with Asian populations or other populations.  So is it that you can't really get a clear scientific answer on the differences?  Is that it? 

And, you know, since you brought up this whole new world of precision medicine, I'll give you the example of the lung cancer drugs that are used to treat the specific mutations in a gene called EGFR.  So that's a gene which has mutated in about 15 percent of Caucasian patients with lung cancer, but it's mutated much more commonly in Asian patients.  And in fact one of the clues that there was even a gene mutation that was important in determining whether these drugs worked or not was because it was observed that the drugs worked better in the Asian patients in the clinical trials even before the genetic abnormality had been discovered. And the clue was what's different about the Asian patients than the other patients in the trial.  

So the diversity is critical to our learning and critical to our application of the therapy in all the diverse populations that we serve.  

So, Mel, when you get to talk to people, what do you say?  Somebody is sick, diagnosed with a cancer, what do you say?  Dr. Schilsky was talking about not seeing clinical trials as a last resort, and you weren't seeing it that way, but today what would you say to people when you talk to them about it?  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on March 21, 2019