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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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