All right so everyone uh my name is uh Antonio Martz I am the the lead for cap alpas side Fraternity Incorporated with regards to the all of us research program um we are very excited about the opportunity to speak about the what is your fear of clinical research for those
That are not aware of the all of us research program and I’ll share my screen uh just to uh speak of the uh program itself the alliv US research program is a research program that’s led by the National Institutes of Health as you can see um from this poster um each
President and every organization is supporting this uh this adventure um all of the divine nine organizations as well as the national pan atantic Council um we are collectively working on this program um which is called the all of us research program and just to give you um
An idea of what it is the Oliver research program is a historic longitudinal effort to GA to gather data from from 1 million or more people living in the United States to create a Diverse Health database that represents us all and to uh give you an idea of that in a
Nutshell um currently right now where medicine is is uh medicine is formed it is formed by those individuals ual that that volunteer for clinical research so if you’ve ever taken any type of medicine or anything that your doctor mentioned that very well may didn’t sit
Well with you and you wanted to and he wanted he or she wanted you to try something else the odds are it was probably not developed with uh with you in mind it’s it’s traditionally developed with those that volunteer couple of key definitions that I want
You to to be mindful as we have this conversation um engagement Outreach Recruitment and Retention um these are some of the uh the key definitions that you very well may hear throughout the conversation as we speak this evening right now one of the other programs one of the other programs that
We have in place with this is called the divine nonresearch Searchers Pipeline and what that is is a pipeline of researchers derived from the divine nine organizations and tonight with us is one of our researchers uh brother sha W um I’ll give him the opportunity not only
To introduce himself but to speak about his experiences with the divine nine uh researcher pipeline uh brother sh W thank you for that introduction brother Herz um I or brother Martz I’m I’m sorry my name is Abad sha I currently a clinical research coordinator at Cincinnati Children’s I work in our Center for
Autoimmune genomics and ideology um I’m also an aspiring physician so I’m actually applying to medical school currently to matriculate in the fall so I was chosen um for the and applied and was chosen for the application um for the Divine n researchers pipeline just based off of my interest in um serving
Underserved populations as a clinician and I think um my interest um as far as clinical interest and research interest kind of coine for me to um pair with cap alazai but also the bglc to be a part of such a national um initiative with all of us research program where essentially
We are looking to continue to inform Precision medicine so medicine catered towards underserved communities African-Americans things like that and the great thing about the Divine n researchers pipeline is that as medicine as the patient population of society continues to diversify we also look to diversify those researchers right so the
Main point of the pipeline is just to take to leverage basically the um black Greek lettered organizations and whether that’s healthcare workers researchers biomedical researchers and in my case um aspiring Physicians just getting those Minds together to really just take advantage of the large database that is
All of us research program and conduct research whether that is um looking at Health disparities with certain conditions looking at genetic um mappings of certain conditions the just utilizing the overall database to um create robust um data sets and outcomes that will hopefully um inform Precision medicine thank you for that brother shw
And my apologies I want to definitely I introduced myself um but I I do want to the opportunity to introduce the others that are on this distinguished panel um and I’ll allow them to to give an introduction of themselves as well as their background um what I’ll do is I’ll
Start to my left um brother Dr Lee green um if you don’t mind giving an introduction of yourself absolutely thank you brother Martz good evening everyone and what a pleasure it is to be with you tonight um I am Lee green I’m a senior member in the health outcomes and behavior
Department at the mafa Cancer Center Center uh here in Tampa Florida been at mait for um I guess about 17 years uh for the first 16 uh of those years I served as vice president overseeing all of the diversity um equity and inclusion efforts as well as PR and strategic
Communication then but last year uh made the decision to give up all of my administrative duties to go back to research uh fulltime uh trained in uh Public Health with a focus on uh cancer disparities uh have done a lot of um work uh examining the issue that we’re
Talking about tonight of minorities participating in clinical trials and research studies wrote a number of um uh uh seminal papers uh with my research group examining actually the impact of the syphilis study on individuals willingness to participate in h studies uh my este team colleague Dr sne and I
Have collaborated for many years around uh disparities issues um and would be remiss not to mention that I’m a member of the Tampa alumni chapter so shout out to my brothers from Tampa alumni thank you brother Martz thank you uh Dr Green um and last but not least because of
Brother shab um has introduced himself and his background as well um Dr sne and and Dr sne um after your introduction you can segue into your presentation um that you have for us this evening so Dr sne yeah brother Antonio thank you very much I’m very
Happy to be here with all of you this evening again I’m Dean Kevin Sneed uh I’m the founding dean of our us of Health Tasia College of Pharmacy at the University of South Florida if for any reason if you’re not familiar with the University of South Florida we are not
Located in Miami we’re located in Tampa Florida I’m also a member of on the Tampa alumni of cap Alpha and a life a life member of Kaa alphai and as Dr Green mentioned he and I have been doing a lot of research with each other for a
Lot of years I consider him to be my big brother but more importantly my great friend so uh what what I’m going to do I’m going to take a few moments here I’m going to share a presentation with you just about the uh give you some background very quick background on on
Why it’s so critically important that we uh get more more of our people and our communities involved in clinical research um I’m going to go very quickly because I want to make sure we’re getting over to really the most important part and having a discussion with uh with the gentleman that we have
Here so I’m sharing my screen and me make sure okay there we go okay can you can you see that screen brother Martz yeah yes we all we all can see okay very good so again I’m just going to speak briefly U this is my the cover
SL of a program I’m the executive director of called Weare um but for the purpose of tonight I really like to start with this particular um news article from many years ago there was a medication that came onto the market it was called Bale and Bill was the very
First medication never approved by the FDA specifically with race in mind it was approved for African-Americans to have heart failure it it showed a marked decrease in the length of stay uh for people in the hospital number one and then number two a continued Improvement
After they left so uh it was a little bit controversial at the time it was approved because at that time we had never had a a medication FDA approved specifically about uh uh for a particular race now again not to get into this entire slide here but going
Back to the very beginning um we’ve known of the historical components of racism in our country know going back into slavery uh The Institute of medicine now known as the National Academy of Medicine back in 2002 uh they had a very important report where they really talked about the underrepresented groups people in
Clinical research and they acknowledged that minorities were far less likely than their white counterparts to receive uh clinical research and clinical trial opportunities and so uh I thought and again not to read the entire thing but it was really important that they acknowledge and you see bullet point
Number five uh the nation’s potential to ameliorate a set of problems that are over 394 years old for Native Americans and 382 years old for African-American communities so that was an acknowledgement that yes we we we understand that there’s a history here and that we need to work really hard to
Overcome it again as part of uh additional research and bullet point number three is the really important component here that underrepresented groups are 200% more likely to perceive harm coming from participating in clinical research now I don’t have time to go into it fully tonight but we
Acknowledged here in our group at week here when we did focus groups that it wasn’t all about just a Tuskegee study because when we talk to young people who had never heard of Tuskegee they still had this very perceived harm so now we’re talking about generational transfer of fear of getting involved in
Clinical research now when we talk about health I just want to make sure we all understand that for whatever medications we take for whatever we uh think we have whether or not we have insurance and and access to health care that overall the social determinance of Health are probably probably the most important
Component of determining health for many people in many communities I’m showing this here this is a part of an article I wrote early on during the pandemic and on the left part you see the number of and this is early in the pandemic you see these red dots
And we found that uh people all all across the country you can see where they were clustered early in the pandemic and I began telling people that the most affected people were going to be African-Americans and it’s because we had this cardiovascular cluster and we knew that African-Americans by and large
Have the the largest amount of harm secondary to being secondary to cardiovascular disease and so in another slide I kind of overlap the two and you we already knew exactly when were how and why African-Americans were going to be so affected now because of the pandemic the
Actual death rates that occur here in the country have uh allowed covid-19 to become the number three killer of Americans in a very very short amount of time again heart disease being number one that affects African-Americans more cancer being number two and then covid-19 became number three now when
You take a look at the life expectancy in this in this country if you’re Asian female you see at the very top you have the largest or the longest life expectancy at almost 86 years but then all of a sudden we go down to the very
Bottom and we see that if you are a non-hispanic black male the life expect doesn’t even reach 68 years of age and of course uh we when we combine that with our our American or or native Indian populations as I call them they don’t even make it to 65 years of age on
Average so we have a very large problem here in this country so let me tell you exactly why brother Martez worked so hard on all of us uh again just for time sake I’m doing this very quickly but on the left we have a a young Tiger Woods
We have have a young Beyonce and we have a young Lenny kravis now brother Martez when I when I show this to the young people they say oh that’s the weekend okay they don’t think they don’t they don’t know that that Lenny kravis but I ask a question and I will ask all
Of you if indeed they all had the very same disease State and we gave them all the very same medication can we guarantee it will work the same in all of them and the answer is no because their genetics are different again Tiger Woods had a Asian mother african-amer
Father Beyonce had what we would consider to be two traditional African-American parents and Lenny kravis had the African-American mother and a Caucasian father so their genetics are far different so to try and overcome that we developed a program called We Care this was part of an original Grant
Between myself and um and Dr Green and and what we were trying to do is find ways to overcome that hesitancy right here in the Tampa Bay area and and and here are the issues that really came up is that the community and researchers they were disconnected they were
Unengaged and ultimately many people felt unempowered so what we’re trying to do is trying to accomplish uh overcoming all of that we want to expand a relationship between the community and people doing research we want to make sure that everybody’s fully engaged but number one we need to make sure that
People feel empowered that when they participate in clinical research that they are going to do everything they can to not only engage in it and participate in it but they have to understand the long ter long-term ramifications of it that we are trying to help make sure
That when we come up with a medication or a treatment or it may not even be medication related it could be behavioral that we know it has been tested and it will work for you so here’s an overview of we care but you see over here on the far right we need
Each one of you to advocate for participating and research that affects the most affected people that have the lowest um uh life expectancy in the highest death rate in this country being African-Americans and primarily people of color I just want to acknowledge my weak hair team here uh we have a
Wonderful team we do a lot of workout in the community and then finally the very last slide and then I’m going to turn it back over to brother Martez uh uh uh Dr Green he he likes to say that he stepped down but he really stepped into uh his
True calling of getting back involved in health equity research and so we are putting together what we feel is going to be one of the largest longitudinal Health initiatives ever conducted in this um in this country and so I won’t I won’t Bel that anymore but I’m going to stop sharing
There but I know that was pretty quick but I really wanted to give you all the evidence okay the actual truth of exactly why brother Martez BR subale why they’re so engaged in all of us and why we need everybody to participate in clinical research because ultimately we’re saving ourselves when we do
Brother Martz back to you brother sne powerful and definitely appreciate it a couple of things I definitely want to touch on one I didn’t realize the number three cause of death right now is covid-19 is that across the border does that affect the minority communities um
At number three yeah yeah yeah under rep underserved under represented minority communities whatever in any category have been traditionally the most affected here in this country at one point point in time during the pandemic um African-Americans were three times more likely to to die over our white counterparts eventually over time during
The the length of the pandemic that has kind of evened out a bit but as I often tell people when we only represent 133% of the the population by census that means that far more people in our communities were affected and so yes U that’s across the board but we would we
Took the the un uh we took the largest brunt of that that death rate got it and this one probably is for both you and Dr Green um when initially the the vaccine came out um I know there was struggles with getting participants because I know Emer School of Medicine here in Atlanta
Uh they were trying to get uh enroll um minority participants uh with regards to those studies talk about how that necessarily slowed down the process of getting medication or getting vaccines um that would necessarily work across the board for all of us well I can tell you right now um for
The three major companies that actually put vaccines on the market here in this in this country um they made a commitment that they were going to have uh uh a fair amount you know a fairly large amount of close to about 20 to 25% of the people were going to be people of
Color and they were able to achieve that but back to your point in the very early beginning they had a hard time I can tell you one of the companies and I’ll just leave them all unnamed they went down to Miami because they figured we
Can get a lot of people a lot of people of color enrolled and after about a six week period they had barely anybody enrolled because they had not engaged a community at all and so then they came back and talked to us here without and because we had infrastructure already in
Place for we care when those same companies came here we actually had one of the highest enrollment by population of African-Americans and some of these clinical trials around covid-19 and then people were saying hey guess what I didn’t get affected negatively when when I was shot and then
We actually got um we actually when I got shot you know got stuck with the shot with the jab um and we actually had one of the largest amount of of uh Pediatrics of people of color right here with our Weare program so uh yeah you’re
Exactly right it was a struggle in the beginning because of the historical aspects of of of lack of trust in clinical research so one of the things that I do recognize and and and why I’m so passionate about um you know going in our communities is that a lot of times
That we’ll see that our communities are more resistant to to getting involved if the messenger doesn’t necessarily look like them so you know it is most it’s most important it’s definitely important to when that message it’s a trusted messenger um and what I mean is you you know our minorities or or the
Underrepresented community are more inclined to listen to others that look like them I notice you mentioned um when they went down to Miami they were the enrollment process it was a bit slow but when they came to Tampa you know we just looked at your team um you know speaking
Out and and getting individuals enrolled does that play in your in your professional opinion a a major component on getting people to be open-minded as it relates to clinical research uh yeah I’m going to say yes overall it makes a it made a massive difference here but
Let me tell you what made the biggest difference uh it wasn’t me going out to the community or or Dr Hill Dr Angela Hill who was shown there going out to the community the biggest thing that happened is that we partner with a local group called reachup
Incorporated uh that that does uh that works on black maternal Health here in Tampa they had the connection to the community if I had come up and said hey come listen to Dr sne they weren’t going to listen to me but when when when Dr uh Deborah Austin came and said hey will
You come listen to my friend Dr sne he has something important that can share that he wants to share with you it made all the difference and I can tell you right now and Dr Green was right there witnessing this entire thing uh we did I personally did 146 educational programs
Around covid-19 around the vaccine but more importantly we had the we had the uh the second highest U vaccination rate of African-Americans in the State of Florida and subsequently at one point we had the the second lowest death rate it’s funny you know doc brother Martz
It’s it’s funny how that math worked out brother Lee do you agree with that brother green absolutely it’s just amazing how that worked out and I I’d love to hear hear from you know hear your perspective on on what was happening around that time from a research going you you know I think
You’re um maybe underselling a little bit um the old over 100 plus um sessions that you did in this community I understand that the um collaboration with some of the other partners but if if we didn’t have Physicians uh researchers going out into the community uh making sure that people are made
Aware uh of what’s going on as it relates to covid-19 cancer whatever it is we need folks out there um you know um uh making sure that we’re providing proving that message that’s the most important thing uh you know as we talk about deterrence even for clinical
Trials one of the most important things is lack of awareness is that people don’t have the information that they need they can make an informed decision with regards to participating so I I think canot not unell the number of times that you and your team went out into the community to do that
Education absolutely and um while while we’re on this conversation um I do see Dr McMurray Heath on um I had the opportunity to make an introduction to Dr Lee Dr Green earlier within the call she has a vast background in clinical research when she was working with
Johnson and Johnson for years so uh Dr McMurray E I would love to hear your opinion uh on the conversation and the discussion um that we’re having well it it completely resonates with my experience during the pandemic when I was at the biotechnology Innovation organization we actually in
Addition to doing Outreach we set up a covid vaccine faa.org website that really broke all of the medical and scientific information down into language that my mom could read and understand and I think that was critically important we have to make sure that we’re translators to our
Community as well as get out there but let’s talk about how important clinical research is I mean the Bal example was such a great one to start with um because if we are not part of the population in which these medications are determined to either work or not
Work and we’ll have no idea when it arrives at our doorstep if it will or will not work for us and this is becoming more critically important every day um as of last fall the Food and Drug Administration which at which I spent five years um started um mandating
Diversity action plans for every pharmaceutical being developed that means means every drug company has to come out and and specify what percentage of participation from diverse communities they plan on having and the FDA has started sending what people are calling nasty grams to companies that are not meeting those commitments
Implying that if they fail to meet them those medications will not be approved but it’s no longer just a regulatory issue um in the last 12 months payers have also jumped on this bandwagon so in addition to CMS uh the center for Medicare and Medicaid services now requiring additional clinical data for
The new Alzheimer’s therapies um large insurers like Express Scripts are also starting to look at FDA clinical trials and saying well we don’t think they were diverse enough we don’t think they were large enough they didn’t have the typical diseases that um our patient communities have for us to be able to
Ensure them for our populations now part of me wants to jump up and down and say well that’s great finally someone’s paying attention but part of me is also really cognizant of the fact that this may mean an extra delay for our people getting access to new breakthrough medications we’re
Already facing at Mayo um the fact that they won’t admit anyone to alzheimer’s therapy for the newly approved drugs that do not meet the original clinical trial criteria so if you are an elderly obese African-American male you cannot get the new Alzheimer’s drugs at Mayo
So just let that sink in for a minute because getting that additional clinical data doesn’t happen overnight it could take five 10 years sometimes and if we’re waiting extra amounts of time before we have access to Innovation the health disparity Gap is only going to grow so while it’s so wonderful that we
As a community have been so focused on making sure that there’s equal access and insurance we also have to make sure there’s equal Innovation because what we have on the medicine shelves today is not enough to make us all healthy no matter what your complexion but what the
Future holds what’s possible what’s in the pipeline is where the true cures are going to come and we want to be part of that future Dr McMurray can I can I add on thank you for acknowledging the bual and and know the great work that you that you’ve already accomplished um and
Let me just share very quickly in 30 seconds or less you know the original study for Bale uh it was a failure and and and um and and I was participating with one of our cardiologists here uh that was actually uh he’s at Duke now so it’s kind of kind
Of interesting that you that you you know you were have the affiliation but when they went back and they did a sub analysis brother Martez and they they saw the little bit of of of of benefit they said well who were those groups of people and they found that it was
Actually the African-American group but they had so they had so few people in the blacks in the original clinical trial that we almost missed what we call the signal so luckily somebody went back and and took a hard look at that uh transitioned it over for uh to a a
Gentleman and a company in California they redid the clinical trials uh focused on African-Americans and now we had this FBA approval and so uh just I think your point around the FDA and and even express scps now telling people uh we need more evidence I think that is a
Medication uh and that story outlines exactly what you just said wow wow powerful definitely powerful um I want to ship gears um you know and touch on um you know the elephant in the room what are the fears of clinical research what are the things that are are detering um the underrepresented
Population from getting involved I know um brother Dr sne you touched on the social determinance of Health um and that’s access and the ability to be able to do so and and then you also touched on the the Tuskegee project what do you think uh uh and and this this this goes
For everyone um that are present what do you think are some of the deterrents that scare or or or or bring a sense of fear to individuals to get in with clinical research well Dr s you go ahead we haven’t heard from you um thank you yeah um brother
Martz I think that’s a really important question I think for me um in the clinical atmosphere that I am in I’m in a genetic research lab and recruiting African-Americans and underrepresented um communities into this research has been a struggle that we have continued since I’ve started in this position
About um a year and a half ago and I think what it bubbles down to is M Trust trust in um medicine and biomedical research and like Dr s touched I think the mistrust is understandable as far as past research and past um I guess misfortunes in the African-American
Community and I know for me when we are recruiting in clinics or be it out in the community a lot of the mistrust does come from um the past but as well as just not having enough information not knowing enough about the study and just being curious as to okay I’m entering a
Genetic risk study but what after I’m out of the study what is being done with my DNA I don’t want my DNA just out there for anybody to utilize things like that so I think the delivery um as far as letting these patients and participants know the safeguards that
Have been put in place um in modern medicine modern research compared to the past and just kind of like you mentioned before the fact that researchers that look like them giving them that information is kind of just a small way to build that trust back into the
Community I think just continue to build on that whether that’s increasing the diversity in the researchers things like that and then ultimately going out into the community meeting your patients and participants where they are um not just expecting people to kind of have this um sense of oh these are researchers these
Are the hospital or the clinics are some someplace completely separate from the community so bringing your presence out to the community giving them information presenting the research in a way that is more digestible things like that and I think just small ways that we can continue to build the trust in um
African-American undeserved Community specifically is a major point of fear um at least from my experience and you know we we hear you know obviously a lot about lack of awareness lack of information mistrust of the medical community you know those types of things but there’s another key
Area that we should not Overlook and that is uh you know some of the logistical U issues or challenges that people may face uh because we hear about this from patients all all the time at maet I don’t have you know Transportation I don’t have child care
Uh the time commitment uh that may be required for me to um uh participate may not be there uh that you know some trials may require some type of financial uh commitment of some sort um and and so if there’s a a frequent requirement for you to be at the study
Site that may not be feasible for everybody and so we cannot Overlook the fact that there are logistical challenges that people face and as institutions you know Mafia USF Etc we need to figure out a way to break down you know those barriers how can we help people with those Transportation needs
Uh that may prevent them from participating and so sometimes I think we forget about that huge piece which is just the logistical issues you know Dr Green I can add on very quickly he talked about the elephant in the room on one thing you and I encountered if you
Recall when we when we started the center for equal hell under your direction uh we had a mistrust of um of our African-American uh Physicians uh here in the Tampa Bay area and and what was happening and what happened historically long before you and I even came to Tampa
Is that they would get involved and they would send people they would send their patients over to say Mafi or USF uh to be involved in the clinical trial but then they couldn’t get their patient back because uh now they got inserted into a whole other system and and so
They said well I’m not going to send my patient over to a for them not to send the patient back to me or to steal my patient away so we had to work hard to number one build rebuild the trust out in the community but then number two we
Had to make sure that for people involved in clinical research in our institutions that they were not going to uh uh return that patient back to the uh to the community referr in provider so there’s a lot of different components on brother Martez in terms of of that
Question you ask like what are the deter for what are the barriers there are many and there are many levels and degrees of it and we have to address and work harder at all of it so I just wanted to share that that was another U thing that
We encountered early on in the center for equal health and and I couldn’t agree more with all of what the panelist said I will throw in some statistics that are fascinating as well Brigham and women recently did a study that showed over a 10year period African-Americans presenting with heart failure symptoms
Were 20% less likely to be referred to the Cardiology WS as opposed to either turned away or referred to general medicine wow even though being admitted to Cardiology had a better outcome at the other end up up to 42% of black and brown patients say they have personally experienced racism when
Interacting with the health care setting and 70% of Black and Hispanic patients feel that they receive unequal care from the Health Care system so there’s the historic barriers there’s the logistical and financial barriers which are incredibly real there’s working out uh this network of clinicians that has to
Work together but then we as a medical as health providers and Medical Systems we have to do better in how we are taking care of these patients when we do expose them to a clinical trial because right now 20% of all clinical trial participants drop out wow um thank you
For those statistics I mean you know it’s powerful when you have numbers to back up the data um and the information that you’re presenting um and and what I’ve recognized too as well um is generational as well and and that brings me back to you sh brother sh W um since
You know with regards to the panel you um appear to be the youngest um on the panel um and the most in touch with with say our our Collegiate or undergraduate or younger generation um what’s your what’s your your impression of clinical research or or from conversations with
Your peers um you know what’s what’s your your your impression of getting involved with clinical research because I know our older Generation Um that are more in touch with the the past and some of the things that have occurred what’s your insights on it and and and how does
Your generation feel about getting involved with clinical research yeah um I think I can speak to that aspect as far as whether it be conducting clinical research or participating in clinical research I think a lot of my peers share the same sentiment as me as understanding the past learning from it
And then kind of understanding the trajectory of biomedical um research currently so I think a lot of um more younger researchers and participants are interested in the fact that a lot of medicine in the past hasn’t necessarily been catered to underserved community these things like that and I think
Partaking in research where they are the outcomes are specifically tailored to them is really important so I think that ultimately falls down to or boils down to the fact of self- advocacy in a way is where we know that medicine hasn’t uh traditionally served us the best way
That it has um been able to serve our white counterparts whatever that may be and now literally taking charge of our own health through participating in certain clinical trials that do um look at maybe medications that um affect cardiovascular disease in the African-American Community knowing that African-Americans are more susceptible
Disease like that looking at conditions such as um renal um failure asthma that these conditions that are disproportionately affecting African-Americans and now we’ve seen our parents we’ve seen our uncles and great-grandparents kind of suffer from a lot of these conditions generation after generation after generation so I think a
Lot of my peers I can’t speak to all of them but I think a lot of my peers will share the same sentiment as far as okay now it’s time for us to advocate for oursel going into Health Professions going into health research professions things like that just to really in a
Sense to me I think it’s giving back to our communities and I I know that’s a major aspiration for me as a physician is like I know I want to serve these communities for the sake of knowing back home I have um family and friends that suffer from these conditions that
Haven’t um always been um I guess outcomes haven’t always been tailored um towards my community specifically so I think I can definitely attest to the fact that our generation hopefully is looking to just have a larger impact when it comes to biomedical research and improving the trust and the access to
Healthcare as well very well said um Dr sne you touched on um you know some some of the doctors in the community uh within your area and being hesitant to um you know advise their patients of clinical research um are are doctors informed of the available clinical studies within their areas or or
Clinical studies that are available to their patients and if so um are they advising your patients of these options uh yeah I I can answer that in two parts and maybe even the third part uh by and large depending on where you practice if you’re not really uh
Historically if you’re not attached on to an academic Medical Center uh you may not be well informed of all of the the clinical research and clinical trials that are going on I mean you’re trying to run a business at that point you have other concerns and and at the top of
Your mind is not going out and trying to see number one what CL what are the latest and greatest clinical trials that are out there available that I could either participate in or encourage my patients to do that’s number one um but then number two and something that we’re
Working on uh diligently right now uh you know I’m I’m doing work with the uh both the the Institute and the national Medical Association uh very often many of our physicians in our communities are are uh don’t have the infrastructure in order to number one conduct their own clinical
Research or even have people that can help facilitate that clinical research and so we have to do a much better job right now helping number one uh help we want to help them develop the infrastructure so that they can become a clinical trial location themselves that will do a lot of overcoming the
Challenges that Dr Green just talked about in terms of logistics U maybe decentralizing clinical research and putting it in the community where people live and where they are already going and we have to work on a process in order to accomplish that and so um but I
Do believe that for people that have an interest uh I think they do refer people for clinical research if they but but it’s such a small number that the impact is not exactly where we need it to be to affect um tens of millions of people are they
Incented in any way to refer their patients uh not directly and that the the the incentive always relies or goes back to the individual that’s conducting the research and so uh I’m not I’m not completely aware of uh a total program where there’s a there now you have to be
Really careful of what we call Kickbacks where you know if you refer so many people we’re going you know you we give you as a business will give you some money for doing that um but but if we can change the profile of people who are conducting the research and and
There are I have collaborators right now I was communicating with today at Morehouse uh school of medicine for example where we can actually uh the incen you the incentivization of getting more clinical research done is that if you’re the one conducting it very often the the um the
The sponsoring company will will provide provide you with additional revenues to cover what you could have made if you had given that spot to one of your patients and so for for people in communities that are doing clinical research it can be rather lucrative because you are getting paid per patient
Or you are getting paid for hitting certain Milestones but just in terms of referral uh that that can get into a little bit of a touchy area and so you’re right if they’re not if I don’t have an incentive to send people over and if there’s a
Fear I might not get them back then I’m probably not referring as much as I should probably has aant to do so um Dr Dr Green I mean with oh I’m sorry were you you’re about to speak on that yeah I was gonna uh go back to the point of uh
That Dr sne made which is a a critical one and that is you know a lot of the community physicians may not be aware of you know what’s happening at the academic center as it relates to clinical trials uh but this may be the the point where the patients uh can be a
Little bit more uh aggressive in terms of advocating for themselves so if there is a condition where you know they feel like you know is there a clinical trial out there that I might be eligible for to have that conversation with their doctor even if she or he don’t recommend
It if you push the the envelope to say you know what I would love to know if there’s anything out there that might be helpful for me in terms of a clinic trial and then hopefully that doctor would do the extra leg work to connect
With a mfet or USF to see if there are any available clinical trials and so we we and Dr and I have done this a lot and that is educating the the patients in terms of being their best Advocates and understanding and knowing how to talk to their physician uh to advocate for
Themselves glad yeah now see yeah now we’re riffing off of each other Dr Green and you’re probably well aware um I I’ve seen this in up close in personal where and this is where you know before we get off I would love to hear from from my brother
Shabu you know as a in a younger generation the impact of social media and Tik Tok U because um right now we have developed well not not we I was not part of it but uh research has now developed a cure what I’m going to call is a cure for sickle cell
And it’s called crisper therapy and and and it’s a very directed and genetic uh um manipulation or of the patient the and and people are starting to hear about it and they’re saying wait a minut I can be cured and I won’t have to go back into the hospital as much and so
I’m I’m watching people now inquire of what this is and many Physicians don’t even know what crisper is to be honest they they kind of heard about it they they they know a little bit but they’re not involved in the research but now they’re asking where can I go get it and
And uh some of that research was being done right over at mofet and so I think you’re exactly right uh you know before we get off I’d love to hear Brother shab you know just your thoughts on on the impact of of messaging so uh so that we
Can accomplish and Empower uh people in communities especially younger people or people that have rare diseases to be able to go out and get uh get to a clinical trial that can potentially save their life yeah I can speak to that um just in my own research right now as far as
Recruiting I think social media is become social media AI any side of any sort of new technology is becoming such a great means of recruiting and get getting the message out for clinical research and clinical clinical trials so I think things such as you mentioned Tik Tok your Instagram Facebook even I know
That is a large platform for us to use just to kind of get a different audience and understand like okay this is a research that be beneficial to you and then maybe giving them some links to um websites things like that where they may have additional information so like
We’ve all touched on today I think that’s just another way of increasing patient advocacy and like okay this is something I saw on Facebook bringing it to my primary care physician or whoever that may be um is this something that I may be eligible for I’m not in the place
To um make a clinical decision on my own health or anything like that but bringing that to your um primary care physician and getting an informed decision from The Physician so I think that uh social media is a great way for um patients to continue to just like you
Said um self- advocate for their own health um Chaz lazama made a a very interesting point he mentioned in the chat um yes social media has driven its own narrative and there is a good boost of people discussing things that are both factual but also an inaccurate
Information um you know how how do you how how are we policing that inaccurate information um that’s being shared um amongst because you know how how things start when things are being shared it’s taken and ran with and it’s hard to to kind of Branch away from that so as as
As doctors within this industry um how do you you manage the the the information that’s presented that’s not true well I I’ll I’ll start with a quick comment you all may see me kind of smiling here because I’m I’m I’m very critical of going out and I tell my
Patients all the time you know Dr Tick Tock is not the best doctor in the world okay you know do I mean do Dr Tik Tok and you know but you’re asking a critical question you know when I was you know I do a lot of interviews on you
Know on on on different media platforms I was on one night with a guy from PolitiFact and and um and I share with him you know the bigger challenge is the fact that I can’t be there at 1:00 in the morning when people are on their
Phone but it only takes that 20 minute period of being on that phone on Tik Tok to get misinformation and then it’s being reinforced and then the algorithms the moment they see that you are that you are looking and buying into that well now they start feeding more of the same
Type of misinformation to you and so I think we’re going to have to really you know we saw a couple of weeks ago where the CEOs of of um of social media and you know we’ve seen the Facebook CEO and other people we watched them you know we’re going to have to do
A lot better about you know correct correcting the algorithms that are driving it but but as as as a provider as a person involved in clinical research and has done it uh I can’t be there at 1:00 in the morning uh to to guard guard against uh Dr Tik Tock
Telling someone uh the wrong thing and and and we we should not um and not that any of us are doing this but we shouldn’t throw the baby out with the bath water because you know the internet is chalk full of great information you know mfet has a website
That has great information but you have to figure out what’s going to be my true Source where I know that the information that I’m looking at is uh is the other piece is if you run across some information that you have questions about go back to the source go back to
Dr if he’s your physician to say hey I read this uh on the Internet or I saw this on Tik Tok What can you tell me about this so that I do have the accurate um information brother sne can you um repeat the information that you made
Mention of the CLE cell um trial remedy I I I I no I can do that and I’m also going to drop something in the chat it’s called crisper uh you have it spelled right except there’s no e on the end okay there’s no e on the end it’s c r i
S p e p r not e r but p r and again I’m really proud of the fact that that the initial person the initial person that I’m still going to call it a cure at this current moment was actually a young lady down in
Miami she was in and out of the hospital but a year after she got into the clinical research and she was the very first individual uh that that engaged in the longterm study she no longer had any any medical crises she didn’t have any CLE cell crises and and uh and they
Showed a picture of her engaging in in karate and Judo something that she had never been capable of doing before that so in just a moment I’m going to drop a few things here in the chat for everybody to be able to look at it on your own got it
And and and while we’re moving on I know Dr Green you you you touched on um the awareness of clinical research and so on um what are the some of the time requirements involved with clinical research and trials um with regards to clinical research and trials yeah that’s
A that’s a great question I’ll respond to this question and brother Martz we have a brother with um a question they have their hand up so sorry get get to them um but I’ll be quick on this one um you know for me if and like many of you if
Anybody’s asking you to participate in anything the first thing you want to know is what’s the uh time requirement what’s the time uh commitment and and that could be influenced by a number of factors uh in terms of there may be Prep Prep work that’s needed uh before the
Trial starts uh all the way through the execution of the trial um there could be um uh for for a participant it could range from uh you know a few months to several years depending on the type of trial that you’re involved in and so one
Of the things that would be crucial for a patient is to understand clearly um in the uh consent papers how long is this going to take now what’s my time commitment per week per month and throughout the uh the year so it depends a lot on the type of trial that you’re participating
In brother lonberger you have a question yeah yeah had uh well a comment to um sure please uh uh you know and uh you know I think that uh the discussion has been very inform informative for me um you know about clinical trials and I know there’s some historical
Hesitancy but you know um I also think that people need to B basically understand the whole concept better um because you know one could say Okay clinical trial I have an illness do I want to go on to a test that maybe help somebody else but I got
One life and you know or should I go with something more tried and true because I’m trying to preserve my life versus going into a test I mean that might be one’s reaction into the term clinical trial because they may not fully understand what not only the benefits that you’re providing to you
Know the the culture and to the race but but that you could be providing to yourself and then the other the other reaction that I had from the discussion um you know it sounded like a clinical trial may not necess all clinical trials aren’t equal I mean you know uh one may
Say Hey you know I want you to go into a clinical trial but they may not have all the resources and all of the ability to really e effectively administer that versus going into some place where you know you’re a part of a group that is actually processing the data and is able
To really affect not only your health but the health of others so I mean those are just some of the things that I heard heard uh uh as I mean I was reacting to as I listened to the discussion tonight very well said brother sne I know you
Wanted to raise your hand to touch on that yeah I was gonna I was going to be on that but I’m G to let you know again I I want I want the Young Brother here to address that last part about can you just share about the standards for
Clinical research because from one site to another I mean I know I can answer it but man you looking so good tonight I I think the people need to hear from you yeah think um just to touch on that last part as far as all clinical trials aren’t created equally um whether you’re
Looking at more aggressive conditions whether you’re looking at something as simple something as simple as asthma and pediatric populations like I’m doing I think the clinical trial finding clinical trials that work for you something that fits you that is tailored for your specific needs is really important and I think it is reasonable
To I guess kind of say like yeah why go with this trial that isn’t true uh tried and tested like some other more conservative means but I think that ultimately does come down to the individual and the um I guess the priorities and I guess the necessity of the actual clinical
Trial and I know um I think we had a question about like the actual cost of clinical trials themselves so I think in terms of monetary you’re thinking one thing when you think of cost I guess it def depends on how we Define cost I think um in clinical trials if we’re
Think talking about costs it isn’t something that’s tested the clinical trial is a trial for a reason and it is look it is exploratory and hoping that um it will improve outcomes but that’s not always the case so I think that’s a major cost in participating in clinical
Research but like I said before I think that ultimately does boil down to the actual individual the um condition the severity of the condition um Etc because clinical trials although advancing the health only you but communities hopefully in the future it may not be what’s best for
You and I think that’s something that the patient has to um kind of be able to talk with their provider and things like that so I want to I want to touch on um the clinical trial component of it and some of the differences in and some of
The things that are offered but I do want to touch on this question um from um Antonio Mahone uh during the session I’ve heard several of our panelists state that African-Americans are more susceptable to heart disease diabetes and hypertension is that due to environment hereditary or Lifestyles all of these are additive
Additive factors of these chronic diseases one does not necessarily dominate the other yeah brother Mar this is this is my area of clinical research this is my area of clinical practice um from an inflammatory standpoint I’ll be very quick um uh Antonio all all of those can be contributing factors uh
They you know to be perfect honest it’s you know and I put in here one doesn’t necessarily have to predominate the other but if you get one or two of them as I often tell my patient 1 plus one doesn’t equal two it equals five if you
Have some of these factors that you’ve mentioned here so I think having an idea of the environment that you live in very often there might be uh some environmental factors in terms of groundwater or air air um air quality and different things lifestyle is a big
Component you know if you you’re in a live if you’re in a in a community where you know we’re going to have gravy on everything we eat six days a week well then that that can be a challenge and then of course the heredity part you
Know you can’t all the way control that but if you are aware of it then you can work harder to not let it become a factor and so all three of those uh are are are contributing factors for the disease States you just mentioned here
Yeah and I did want to touch on one thing that doctors need um actually mention and that’s the heredity part um for my research I’m looking at polygenic risk scores in things such as asthma type 1 type two diabetes that do um we do see manifest in African-American
Specifically so like you said the heredity part the genetics isn’t something that we could control but for me we are looking at certain markers on your genes that we are that know that we know that um are certain indicators that you may have a higher risk for asthma so
We work to put that into your electronic Healthcare record so that your primary care physician they know okay you are higher um risk for these certain conditions such as asthma and then how can we work with you as far as adjusting your lifestyle adjusting the environment so that that high risk and doesn’t
Become you actually Contracting that condition later on so I think all these factors are going to play a role in these specific conditions that do um disproportionately impact African-Americans got it and and I know we’re coming up on time um I do want to share once again the the slide that I
May mention in the beginning um to that that speaks about the all of research program and I wanted to share one of the components as it relates to the program itself in clinical research um the again the program is designed to get a database of over a million individuals
This was a program that came into fruition um by uh President Obama’s administration with the premise of the medicine shouldn’t be custom tailored to a one-size fitsa um you see brother sh shabo is wearing glasses I traditionally wear glasses if we were to switch our glasses his glasses may or may not work
For me and and and and vice versa well that’s how medicine should be derived and one of the things that surrounding this program called the all of us research program is that when you’re in this database you’re not NE you’re considered a partner so you get to pick
And choose where your data goes and whether or not you want to participate or you have your data researched for a particular study when it is research you get to follow that information you get to be made aware of what those researchers come back with and so on and
So on and what things are what remedies or whatever is done with your information so that is one major component that I want everyone to recognize that you are considered a partner with this program and not necessarily a patient um one of the one of of the last final things that I would
Like for us to do is is I’m going to share a QR code that I would like for each individual to scan um as a post survey but one last question for Dr Green as and and Dr Sneed um what resources out there are available for individuals to get involved with
Clinical research do we have a you know a a a unified database where you can go to um and and look up uh available uh uh clinical research what what information is available for individuals to go out and and to see what available studies are there yeah great question
And great question to uh end with because we certainly want to make sure that people are equipped with this information the the first one that comes to mind um is um uh clinical trials.gov I think it is clinical trials.gov where you can go and a huge database I think
It’s a worldwide database of clinical trials that’s going on um obviously you could go to uh all of the academic institutions websites many of them will have their own database of uh uh research studies clinical trials that are going on that you may be able toh participate uh obviously U um NIH is
Another place you can go uh but I think those are you know some of the major uh resources that you could tap into uh to find information and you know um patient advocacy groups uh that you might find online um would have access to that information as well that’s a that’s a
Great resource for uh individuals as well yeah you you you you spelled it out beautifully I know we rang out of time but I put in the chat on the clinical trials.gov um it it it’s one of the my main goto for for many of my patients that have
That have inquiry uh you can personalize it back to what you’re looking for and so also if you are part of an organization or a foundation like uh you know March of D dimes Alzheimer’s anything that’s involving you and whatever your disease state is very often they can provide um a lot of
Information about clinical research and uh before we go did uh were there any questions that anyone uh has for our panelist before we let everyone go uh and if you do have a question feel free to come off mute and and ask your question I have a question has anything been done
Deeply for prevention of prostate cancer for prevention of prostate cancer the only thing we uh talk about there is um early uh screening uh particularly if you have a um uh family history of H prostate cancer um but um no no um prevention types of things other than making sure that you’re screened
Appropriately but let me put in a um brother Johnson let me put in something very quickly and I’m going to go back to brother Martez here um one of the things that all of us can accomplish and and brother brother shabale kind of kind of touched on it is that once we understand
What the genetic markers are once we begin to understand what what what is unique about you that we know can be a contributing factor um we’re and more than likely as we move into the next five years we’re going to be able to determine that so the more people that
We get into all of us with u diverse clinical uh I mean I’m sorry genetic patterns one day we’re going to be able to answer that question and it’ll be as simple as you going on your phone so I think participation with brother Martz and all of us program is going to be
Critical to answer that question moving into the future and I’m and I’m glad you touched on that uh brother sne with if you do have your handheld uh one don’t forget to scan but two if you look in your app store there is a an all of us
Research program app that you can download and get familiar with the program as well as to start the enrollment process um it can be completed at um your your doctor’s office and in some cases it can be done uh via mail um so um I encourage you to download that app
Um to get involved it is the future of medicine um and you know again if we’re one I I I heard a a doctor mentioned when we were at a conference that if we’re not at the table then we’re on the menu and so I think it’s definitely
Important for us to be involved to make sure that we that you know our voices are heard with regards to clinical research and that medicines and medic and and and and healthc Care is Equitable in Fair across the board um because you know our you know our differences is what makes us
Unique um with that said uh everyone I do appreciate your time this evening um I hope this uh presentation this discussion was informative um we do appreciate it um brother Sneed uh brother green um would you and brother uh sh would you like for those individuals that very well may
Have any additional questions to be able to email you directly um if you can put that information in the chat um for them that’ll be great all right and um for those um it this has been recorded so we’ll definitely share this um as well and
Then for those that don’t know it it it also was streamed live on the national pan Atlantic website the nphc website on Facebook so it will be available for review on that so if you want to go back and review or share it um with someone
That very well may not have been able to attend please do and uh Dr McMurray also shared her information as well so please uh feel free to reach out to any one of those subject matter experts if you have any questions so again thank you all for your time uh distinguished panelists
Thank you very much for phenomenal conversation and uh thank you again and good night
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