Ethnic Diversity in Clinical Trials - We Are All Unique So All Voices Must Be Counted!
AiArthritis Voices 360 Episode #24
Air Date: April 19, 2020
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 trust building, then 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 expert patient - 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 the International Foundation for AiArthritis is working to improve diversity in clinical trials below.
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Show Notes: Episode 24 - "Minority Inclusion 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 Lupus SLE 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 - Our organization 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 us @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
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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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Your Co-Hosts & Guests: Who is at the table this episode?
Tiffany Westrich-Robertson
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