Episode 24: Ethnic diversity in clinical trials - we are all unique so all voices must be counted!

 

This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Estela and Juana Mata, co-founders of Looms 4 Lupus, as they discuss the current lack of diversity represented in clinical trials and the need to include all demographics in trials so the therapies that go to market are representative of the real patient population who are using them.

Estela and Juana's expertise from symposium and conference attendance, in addition to Juana's personal experience in trials, helps us to understand both the ethnic barriers to participation and why diversity in clinical research is so important. Tiffany and the Mata sisters discuss continued efforts to include diverse groups in research, especially as we move towards precision medicine, by joining forces on projects like our award-finalist "Preparing Patients for Precision Medicine" project.

In this episode, we use our expertise as people living with AiArthritis diseases to explore trial inclusion challenges and explain the steps necessary to get diverse populations interested in research. The first step is education and building trust, the next step is getting doctors to talk more about trial options. These efforts are underway through our existing projects, but we need YOUR input - the patient experts - to complete them.

Do you want to learn more about participating in existing trials or future precision medicine trials? Would you like to join in on conversations with Estela, Juana, and Tiffany so, together, we can develop the educational materials necessary to help expand diverse inclusion in research?

 

Learn more about your Co-Hosts and how you can help us improve diversity in clinical trials HERE. 

 

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AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).

 

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Show Notes: Episode 24 – “Ethnic Diversity Needed in Clinical Trials”

 

00:52 - Tiffany welcomes listeners and co-hosts Estela and Juana Mata, co-founders of Looms for Lupus

2:22 - Looms for Lupus is a non-profit organization that provides support for people living with Lupus and other overlapping chronic diseases like fibromyalgia or rheumatoid arthritis

2:40 - The Mata Sisters began Looms for Lupus after Juana was diagnosed with Systemic Lupus Erythematosus and Rheumatoid Arthritis

5:29 - Clinical trials are clinical medical research involving people and are either observational or experimental

5:57 - Clinical trials have four phases with increasing pools of participants

8:27 - Lack of awareness of clinical trials among minority communities may contribute to a lack of diversity in participant pools

10:45 - When Juana first told her mother she intended to participate in a clinical trial, her mother was concerned that she might be a human “guinea pig”

11:34 - One reason people may be hesitant to participate in clinical trials is that they don’t know if they will have access to the results of the study

12:40 - Juana found a clinical trial through a Facebook advertisement

13:10 - Participants in clinical trials may get access to excellent doctors

13:38 - Not all rheumatologists will encourage their patients to participate in clinical trials, but you can still become a participant based on your own interest

17:17 - Diversity in clinical trials is critically important because using a narrow pool of homogenous participants will skew the quality of the results since all patients are unique

18:56 - Lupus is more common among black, hispanic, and asian / pacific islander patients than white patients, so it’s a problem if clinical trial participants for Lupus treatments are predominantly white patients

22:15 - 12% of the American population is black, but only 5% of clinical trial participants are black

22:35 - Latinos make up 16% of the US population, but only 1% of clinical trial participants are latino

24:20 - Educating the entire community is necessary to increase support for participation

24:55 - Patients may also be afraid that participating in a clinical trial could harm them, so these fears need to be addressed to increase participation rates

26:51 - Juana first joined a clinical trial in the hopes of accessing a more effective medication for her Lupus

28:16 - Most participants in the AiArthritis community are seeking more effective treatments

28:38 - Patients with well controlled AiArthritis diseases are very reluctant to join clinical trials because they do not want to endanger their current effective treatment

29:14 - Not all clinical trials require patients to take new medications, so even patients with well controlled diseases can make a difference to the community by participating in surveys or other types of trials

31:17 - Some clinical trials use apple watches or fitbits to collect data from patients

31:26 - Juana and Estela are participating in the All Of Us Research program through the US National Institute of Health

34:30 - clinicaltrials.gov is a resource patients can use to locate clinical trials (even trials outside the US)

38:26 - COVID-19 has caused the medical community to embrace telemedicine, which may expand opportunities for clinical trials for people with transportation limitations

44:11 - If all members of the AiArthritis community participated actively in clinical trials, we would all benefit from having better treatments available sooner

44:50 - Minority patients must be afforded an opportunity to share their reasons for not being willing to participate in clinical trials because there is a significant history of discrimination of minority patients in medical research, as well as ongoing issues with discrimination of minority patients in healthcare settings

48:48 - One of the best ways to reach minority communities is to have members of those communities take leadership roles as spokespeople at symposiums or other educational events

52:37 - Diversity among patient advocates is critically important because people trust others who have as much in common with them as possible

53:36 - Healthcare providers need to be educated on clinical trials as well because patients are more likely to trust the information when it comes from the physician they already trust

54:15 - Physicians with a full patient load do not have time to research available clinical trials for each of their patients

54:39 - Clinical researchers should provide information to providers directly if they want to recruit more patients who fit a particular profile

55:27 - AiArthritis is working with some researchers from OMERACT to create a shared decision tool to facilitate conversations between patients and their physicians about clinical trials and precision medicine

57:52 - The Center for Information and Study on Clinical Research Participation (CISCRP) has a wealth of information about clinical trials at their website ciscrp.org

58:26 - Find the Mata Sisters on Twitter, Facebook, or Instagram @Looms4Lupus or on the web at looms4lupus.org

59:00 - Join the Mata Sisters for live Facebook chats every second Saturday of the month (in Spanish)

1:00:11 - Find AiArthritis @IFAiArthritis on all social media platforms or at aiarthritis.org/podcast

1:00:44 - Join our Facebook group or email us at podcast@aiarthritis.org to comment on this or other episodes