Yale, our community partners, and the FDA Office of Minority Health and Health Equity - Catalyzing racial equity in clinical trials through community empowerment.
Yale in partnership with the FDA Office of Minority Health and Health Equity are focused on addressing diverse participation in clinical trials and bridging the health gaps. Visit http://FDA.gov/HealthEquity or https://medicine.yale.edu/ycci/ to learn more about Yale's program or http://yalestudies.org for more on the importance of clinical trials participation for all populations.
Related Resources: https://mdnet.yalemedicine.org/news/clinical-research-opportunities-for-physicians
Yeah. If you want to hear the voice of the voiceless and sometimes you've got to go to where they are. Mhm. Minority groups are the ones who are left out when it comes to different medications trials. Uh huh. Mhm. The question of diversity and the research environment I think is you know, one of the questions of our time. It's really about making sure we have different perspectives at the table and that's something that we strive every day to make sure we're inclusive and holistic and are thinking about diversity and engaging diversity and supporting diversity and research. Mhm. Yeah. Yeah. Equity and social determinants of health are an essential part of understanding what we do. Advancing diverse participation in clinical trials is a key priority for us to enhance community engagement efforts. The FDA Office of Minority Health and Health Equity Partner with Yale University through a memorandum of understanding to engage the community and advance and cultivate the Yale Cultural Ambassadors program. Yale listens to us and we listen to them and that's what a partnership should be about mm. If we're going to generalize the results of any study, we need to have a diverse group of patients. Recent statistics show that Connecticut's population is almost perfectly representative of the population of the United States in terms of racial and ethnic makeup and that's really been a benefit to us to include populations that have been historically underrepresented in those clinical trials. It's having these very populations of individuals volunteering um where we're gonna find the answers to a lot of our common chronic diseases. As I look back over the last 15 years, I can honestly say that the C. T. S. A. And the Yale Center for Clinical Investigation has had an enormous impact on our communities on our health system and how we deliver care. We've created new training opportunities. We've instituted electronic medical record which has made it easier for us to reach out to patients around clinical trials. We've grown our clinical trial volume five fold. All of that would not have been possible if we didn't have the core funding from the C. T. S. A exciting change I've seen over the last few years is the evolution of patient engagement in clinical trials. If you want to understand how to have an impact on a patient's lives, you should ask the patient, what would impact your life. One of the most important things about our research is our ability to have an impact on the actual health of our patient in our community. And even after we've discovered drugs or therapies that are successful, we don't always know that they will be implemented in the community and has a huge impact on that. Our Cultural Ambassadors program involves leaders from organizations like junta or the Ami Zion church organizations that are deeply embedded in the fabric of our community. The trust that the community has in our ambassadors from junta and from Miami Zion has transformed our ability to make research more relevant to the community and to the our patient population. And it's really transformed the face of clinical research at Yale. We went from having participation as low as 2% to 30% of our total participation last year, which remind to represented minorities and some trials. We've gone as high as 80 almost 90% of the community seen junta and yell together and as partners. I think that's where the trust begins. And then they say, well if junta has done their homework and does trust yell, then we can trust you. One opportunity to help overcome some of the barriers to diverse participation is consistent and continued community engagement. We've collaborated to advance and cultivate the Yo cultural ambassadors program through the engagement of community partners so that we can raise awareness and advanced divers participation in clinical research. This is a template that we think might make a monumental difference and how we do clinical research particularly with marginalized and unrepresented populations. Yale has used our images and magazines on trains to show the community we are partners and we share with our doctors and our nurses some of our ideas to better serve our community. It's not just a latino issue. It's not just an african american issue. It is a community wide issue. Yale has come to our churches to do recruitment. We're able now to partner in such a way as we can empower members of our community and sleep studies, asthma, diabetes. Yeah, wants us to be knowledgeable. That is what has made this partnership so successful. Both the world of medicine and the world of science have gotten much more complicated and really require teams to be able to accomplish the goals that we want to accomplish. We've developed a program in concert with the School of Management, which we call the emerging Leaders program which helps to teach all of our emerging leaders amongst the faculty how to work together not just the School of medicine but the School of Nursing and all the other components of Yale New Haven health system and individuals who are actually at the Connecticut V. A Medical center as well. One of the sort of key aspects of that program and really the whole community is mentoring and mentorship, taken very, very seriously. Not a single person has tried to take me and shape me into their image and likeness. It's really been about helping me find my position, my place, my own vision and voice. Uh and I think that's the key to true mentorship together. Why CC I provides a community that can take these young scientists and these exciting clinical research programs based at the Vienna make them part of our community. The most important thing that academic medical centers do is raise the next generation of scientists and physicians, scientists and I'm very excited about how we will do that in the coming decade and the role that Y. C. C. I. Will play. Mhm. Having the right information at the right time at the bedside could literally save lives. It's just not that long ago. If information is often stored and locked away in closets and filing cabinets that has pretty much gone away electronic medical records. We can, with a few clicks, see all the lab results, the notes from other physicians and nurses at another institution across the state, even across the country in recent years. The availability of enhanced informatics through our electronic medical records and genetic information about our patients makes it possible to deliver tailored therapies. We also have the ability now to study new therapies and outcomes in the real world setting through pragmatic trials and other innovative methodology here. Right. Yeah. We really pushed the envelope for innovation and healthcare research informatics. Partnering with Epic and forte, we've dramatically improved what are investigators have access to any information that they can use for research. We've been able to integrate Epic with Encore R. C T. M. S so that we now know when patients have had a serious adverse event or potential one across any of our hospital in our system. One of the most important things that the electronic medical record helps us to do is to have the right match the right patient the right time, the right trial. The metro patient portal has also been game changing for research from the standpoint that it's also helped us achieve a level of diversity or digital diversity. If you will, The patient portals available 24 hours a day, seven days a week. We found that minorities are even more so responding after hours. We've gone one step further by having direct patient functionality in the patient portal and their patient privacy is protected. We want all of our lessons to be transferrable to all of our partners so that that approach cannot only be implemented here at Yale, but can it be implemented at washoe at Duke at University College of London. We were the first to integrate the E H. R. And the C T. M. S to really support clinical research building compliance. We were able to take those lessons partnered with our vendors Epic and Forte and now over 80 centers from around the country. And even as far as London and Norway, come in and understand the way we've transformed our clinical research enterprise, we are innovators. The way we've integrated our clinical care with our research informatics has dramatically improved care for our patients. Mhm.
