1 hr 2 min
Episode 24: Ethnic diversity in clinical trials - we are all unique so all voices must be counted! AiArthritis Voices 360 Talk Show
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- Education
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.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
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).
Be sure to check out our top-rated show on Feedspot!
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
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.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
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).
Be sure to check out our top-rated show on Feedspot!
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
1 hr 2 min