Child Study Center Grand Rounds 04.05.2022

May 19, 2022

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The Impact of Community Engagement in the All of Us Research Program

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00:00Nordies
00:04sorry, the recording of progress.
00:06I have to say got it.
00:09Well that's OK. 8.5% unreported,
00:12so that's the majority of genomic studies.
00:15But what we have been able
00:16to accomplish in the NIH,
00:18all of US research program
00:20has been unprecedented.
00:21Today we have over 450,000
00:23participants enrolled in the study,
00:25with over 350,000 participants with
00:27active information in our database.
00:30And I'll tell you a little bit
00:31more about what that means.
00:32But what does our all of US
00:35research program participant
00:36population look like over 80%?
00:38Is what we consider underrepresented
00:40in biomedical research what we mean by
00:43underrepresented biomedical research?
00:44We also mean race and ethnicity.
00:46We mean great age greater than 65.
00:49Those populations that have less than a GED.
00:51We think about populations with
00:53income less than 25% and we think
00:55about sexual and gender minorities as
00:57well and also race and ethnicity over
00:5980% in the represent that category.
01:02But if you look at that category
01:04of race and ethnicity,
01:05over 50% of our participants right now.
01:08Present a racial and ethnic minority
01:11with 20% of our participants.
01:12For example, being African American and,
01:14as was stated at the onset of my talk,
01:16I'm a cancer disparities researcher.
01:18By training.
01:18I was very fortunate to be in a small club.
01:21If you will,
01:22of of researchers who have received an R1.
01:25But when I think about I'm a
01:27health disparities research that
01:29specifically conducts community based,
01:30participatory research,
01:31CBPR those of us that know about CDPR.
01:35Those of us that do community
01:37engaged research. We know the time.
01:39It takes to collect primary data,
01:41particularly primary data,
01:42that is diverse and reflects
01:44the diversity of our country.
01:46If I if a researcher,
01:48if I would have had access to data such
01:49as the all of US research database,
01:51when I was an early stage investigator,
01:53I am very confident that that would
01:55have actually speed up my research
01:57career and allowed me to ask
01:58innovative questions and inclusive
02:00questions early on in my career.
02:01So I am so excited about the
02:03intentionality and the results of
02:05that intentionality that we that we've
02:07achieved in the all of US research.
02:09Program.
02:17So when also thinking about
02:18research and diversity,
02:19as I said earlier, we've been very,
02:22very successful in that all of US
02:24research program of achieving a
02:26participant pool that truly reflects the
02:28diversity of the US with over 80% from
02:31representing underrepresented biomedical
02:33research and 50% racial ethnic minorities.
02:35But in Full disclosure and transparency,
02:37we have a long way to go when
02:38it comes to researchers.
02:40Currently only about 6.9% of our researchers.
02:43Utilize our database.
02:45Our African American about
02:479% are Asian American,
02:49I mean American Indian,
02:52Alaskan native, 27.7% Asian.
02:54But we still have about 48.4% white
02:56and so we have a long way to go when
02:58we think about making sure that our
03:00researchers reflect the diversity
03:02of our participant population.
03:03We have been very successful in career level,
03:05though ensuring that almost over half of
03:08our participants are graduate trainees,
03:10research fellows and our early
03:12career tenure track researchers.
03:14So we want to make sure that the
03:15the level of diversity that we've
03:17achieved in career level is matched.
03:19And when we think about the race
03:21and ethnicity of our our research
03:23research community,
03:24this is an example that I like
03:26to highlight because as a cancer
03:28disparities researcher trained
03:29in cancer prevention and control,
03:31I was very excited and my research ban
03:34across cancer preventions and lung,
03:36prostate, colorectal,
03:37and cervical and breast cancer.
03:39So I was very excited when the in 2012,
03:43when the NIH NCI.
03:44Came out with the national lung
03:46screening trial.
03:47I was excited because for a change
03:48we were going to,
03:49we had got data that showed that
03:51as a result of this national
03:53screening study that there was a 20%
03:56reduction in lung cancer mortality.
03:58That was huge.
03:59But unfortunately the lack of
04:01diversity in clinical trials can
04:03oftentimes lead to a lack of improved
04:05outcomes and high risk population and
04:07lung cancer is one of those areas.
04:09So when we think about this pivotal study,
04:11the national lung screening trial,
04:13the NLST that resulted in 20%.
04:15Production lung cancer mortality
04:17because it showed that screening high
04:20risk populations using a low dose
04:23CT can detect cancers earlier and
04:25prevent mortality from lung cancer.
04:27However,
04:28when we think about the populations
04:30that were included of the 53,000
04:32participants that participate
04:33in the study across 33 sites,
04:35only 4.5% of those participants
04:38were African Americans,
04:39and when I brought this information
04:41back to our Community Health Center
04:43where I used to do my research,
04:45my research.
04:46Embedded in a community primarily
04:48embedded in fairly qualified health centers,
04:50and when I began to look at the
04:53screening guidelines that arose as a
04:55result of the national lung screening trial,
04:57many of the providers that I would speak to,
04:58they would say Kareem the the the
05:01screening screening parameters
05:03that the NLST hat does not reflect
05:05the smoking history that we see
05:07in our patient population.
05:09Our our patients may be smoking less,
05:11but they may be smoking for longer years,
05:13or they may be smoking for less pack years.
05:16But more cigarettes.
05:16But are they making spoken?
05:18Different types of cigarettes
05:19and tobacco products than what
05:21was assessed in this NLST study?
05:23And the other thing that my
05:25research might clinician community,
05:26let me know was that the study
05:28didn't take into account a lot of
05:30the social determinants of health
05:32that determine why people smoke and
05:34how people smoke and the stressful
05:36situations in which many people
05:37who smoke in our community clinics
05:39that they have to deal with.
05:40So unfortunately,
05:41while this study was groundbreaking and
05:43I am so thankful that it was conducted.
05:46And it did lead to a change in the
05:48United States Preventive Services Task
05:50Force guidelines for lung cancer screening.
05:53What was concerning for me was that
05:55a the participants in this study did
05:57not reflect participants who carried
05:59the highest burden of disease and
06:01what was also concerning for me was
06:03that I had to then come in and try
06:05to say that these study results were
06:08generalizable to high risk populations.
06:10So I was very happy when I was funded by
06:13the the NIH D to actually do a similar study.
06:16Looking at lung cancer screening,
06:18but taking into account things
06:20like structural violence,
06:21structural inequities,
06:22and other systemic factors
06:23including systemic racism that
06:25many of our participants deal with.
06:27So I I show this as an example to
06:29remind us that even in efforts
06:31where we have changed the paradigm
06:33of what it means for screening in
06:36in conditions like cancer,
06:37we must ensure that the participants
06:39in these trials reflect the populations
06:42that carry the highest burden of disease.
06:45So how all of us are doing
06:47things differently,
06:47particularly as it thinks to things and
06:49issues that are important to your center?
06:51We think of,
06:52I think,
06:52about the inclusion of pregnant
06:54individuals and studies.
06:55Historically pregnant individuals have
06:57been underrepresented in biomedical research,
06:59and we all understand the reason
07:02for that underrepresentation right?
07:04We know that a lot of the
07:06underrepresentation has do been due to
07:07a lot and a lot of intervention studies.
07:09We want to ensure that the benefits
07:11of a clinical trial outweigh the risk,
07:14particularly as we think about
07:15pregnant individuals.
07:16However,
07:16our lack of including pregnant
07:18individuals in large cohort studies
07:20has not allowed us to have this
07:22ability to follow pregnant individuals
07:24and their offspring over time.
07:26So, for example,
07:27we have not been able to properly
07:29assess why African American women,
07:32despite having some time in
07:33many instances higher.
07:34Education status than others
07:36still have worse birth outcomes,
07:38so there was a study done by Doctor
07:40James Collins here in the Chicago
07:42Land area that showed that an
07:44African American woman with a JD
07:46or a PhD was more likely to have
07:48worse birth outcomes than a white
07:50European woman with a GED.
07:52And what that study showed by
07:54Doctor Collins is that something
07:55other than social economic factors
07:57and education levels are
07:59at play when it comes to African
08:01American women and women of African
08:03descent and birth outcomes. So we are.
08:05I'm really excited that the all
08:06of US research study has been
08:08intentional and including pregnant
08:10women in our pregnant individuals.
08:12Excuse me in our study, for example,
08:13we have over 7% of our current
08:16participants of the 300 + 300
08:18+ 1000 are preg individuals.
08:20We have a long way to go,
08:22but I'm hopeful that through conversations
08:23like that what we're having today,
08:25researchers like you will be excited
08:27about the database that we have
08:29and researchers within your center
08:31who are collecting information
08:32across the life course.
08:34We'll see that.
08:35And all of US research program
08:37database is an effective tool
08:38for you to use in your research,
08:40but in our the top ten conditions
08:42that we're seeing within our our
08:44population is looking at complications
08:46that occurred during pregnancy.
08:48Third trimester pregnancy,
08:49unplanned pregnancy,
08:50second trimester pregnancies.
08:52But then looking at that
08:54high risk profile as well.
08:56And to understand what data
08:58we have in our database,
08:59I'm gonna say this this site several
09:01times throughout the afternoon.
09:02But please go to
09:06databrowser.researchallofus.org again. That's
09:10databrowser.researchallofus.org to learn
09:11about the several tiers of data that we have.
09:14So currently within our our database
09:17we have over 1174 active projects,
09:19so I talked to you a lot about the
09:21importance of collecting the data,
09:23but as a result of collecting the data
09:25we are now asking researchers like you to
09:28actually come in on either our public tier,
09:31our registered tier or our control
09:32tier of our data to go in and
09:35ask innovative questions about
09:37intersectionality so other active projects.
09:39We have projects that I'm interested
09:41in your center.
09:42I think our projects that are looking
09:44at sickle cell disease and pregnancy.
09:45Projects that are looking at
09:47diabetes and pregnancies.
09:48Projects are looking at hypertensive
09:49disorders of pregnancies and even
09:51perinatal stress and and mental health,
09:53and again for to learn more about the
09:55research projects in our Active Directory.
09:57You can go to researchallofus.org for
10:00its last research projects directly.
10:04So what are some of the things that are
10:06our opportunities for collaboration?
10:08I like to highlight the prep source
10:09study and it's collaboration with
10:11the all of US research program.
10:13Preg source is a longitudinal study
10:15that pregnant individuals can join
10:17that is in partnership with the
10:18all of US research program.
10:20So what we have done as all of us is that
10:22we've partnered with another NIH study
10:24PREG source so that individuals that
10:26are in the all of US research program.
10:28Who joined that are pregnant also
10:30have the opportunity to join Preg
10:32source because what this would do is
10:34that this will allow us to capture
10:36information and to collaborate with
10:38other researchers that are doing
10:40research on pregnant individuals so
10:42we can begin to disentangle some of
10:44that intersectionality that exists
10:46between in health outcomes,
10:47particularly in those high
10:49risk marginalized populations.
10:52And researchers like Doctor Nayed,
10:54Noel are exploring reproductive health issues
10:57that disproportionately affect black women.
10:59So for example, this quote is
11:01directly from Doctor Noel.
11:02Doctor Noel is an OB GYN I at Boston
11:04Hospital and she's leveraging
11:05the all of US research program.
11:07Data, say data set to to study hypertensive
11:10disorders in pregnancy and uterine fibroids.
11:13Dr Noel is involved in two demonstration
11:16projects right now using the all of U.S.
11:18data set and so as a black physician, Dr.
11:21Noel says that that I hope that the.
11:23All of US research program will work
11:25to rewrite the narrative regarding
11:26medical experimentation and or the past
11:29exclusion of marginalized populations
11:30and create more participation in
11:33research by these populations to
11:34improve health and the fact that we
11:37have researchers like Doctor Noel,
11:39asking these questions
11:40about intersectionality.
11:41That's going to really allow us to
11:43understand some of these issues.
11:44Even some of the women in my own
11:47family have had this same issue as
11:49it relates to reproductive health
11:51and reproductive justice.
11:53But Doctor Noel has often cautioned
11:55us to understand that while we
11:57are in this process of developing
11:59a diverse collecting information,
12:01we must understand that we have to
12:03address a lot of the historical
12:05medical mistrust that exists.
12:06And I don't like to just say
12:08medical mistrust.
12:09We heard that term come out a lot
12:11when doing the the height of the
12:13pandemic as we talked about access
12:15to and awareness of the vaccine,
12:17we often use the term vaccine hesitancy.
12:20But what I like to say when I talk to
12:22communities that justified medical mistrust,
12:24we think about historical ills and
12:26historical mistrust that has happened
12:28particularly to marginalized communities.
12:30I've had the pleasure for the
12:31past six years of working with the
12:33family of Henrietta Lacks.
12:35When we launched the all of US research
12:37program in my former institution at
12:38the University of Illinois at Chicago,
12:40UIC.
12:40At that time I was doing a project
12:43that was funded by for Corey,
12:45the patient centered Outcomes Research
12:47Institute and in that project I was I had
12:50cancer survivors and cancer advocates
12:52that we were developing and engaging
12:54with researchers so that researchers,
12:56even if that researcher was a basic
12:59science researcher and didn't
13:00conduct CBPR research like I do,
13:02but that we were trying to create
13:04an environment where participants
13:06patients could interact with
13:08researchers so that researchers,
13:10even those conducting basic science.
13:12Research could share their
13:13ideas with cancer survivors,
13:15or they could could create this think
13:18tank environment where researchers
13:19were saying that I'm studying not just
13:22information that's important to me,
13:24or information that I I study in my
13:26dissertation several decades ago.
13:27But research that is important
13:29to populations who are who carry
13:31the greatest burden disease.
13:32So at this time, when I had this grant,
13:35we were getting ready to kick off
13:37the all of US research program,
13:38and at that time,
13:39Oprah Winfrey and the HBO network
13:41were getting ready to launch.
13:43The movie of Henrietta Lacks and one
13:45of the participants in the study.
13:46I'll never forget Miss Rosemary Rogers,
13:48a breast cancer survivor came to me and said,
13:50Karine, I'm very concerned that
13:52we're getting ready to launch this.
13:54All of US research program,
13:56you know and ask people from
13:58underrepresented groups and role,
13:59but we have not had a community conversation
14:02about what it truly means about why
14:04populations who have been historically
14:06underrepresented do not participate.
14:09So, advocates like Miss
14:11Rosemary encouraged us to.
14:13Have a town hall.
14:14That idea led by a patient advocate
14:16turned into a community town hall that
14:19included over 400 participants from the
14:22community and but it also included a
14:24panel that included four generations
14:26of the family of Henrietta Lacks.
14:29It included her great great granddaughter,
14:31her great granddaughter,
14:32her granddaughter and her daughter in law.
14:34Jerry lacks and the importance of the
14:36relationships that were built by us.
14:38Having that that community town
14:40Hall forum is it.
14:41Imagine the community impact.
14:42When you have the family of Henry at the
14:46last speaking to your community members,
14:48letting them know that yes,
14:50historical ills have taken place in the past,
14:52we acknowledge that,
14:53but we also acknowledge that it's so
14:56important for us to have a seat at the table.
14:58The family here at the lack of knowledge
15:00that the work that we were doing to
15:02advance genomics research by including
15:04communities that have been historically
15:06represented what's important to them.
15:08So imagine the impact of hearing first
15:10hand from the family of Henrietta Lacks.
15:13About the importance of
15:15diversity in clinical trials,
15:16that is what I consider
15:18true community engagement.
15:19Launching our all of US research program
15:21off with the with the voice of the lacks
15:24family was a gift that is so amazing
15:26to me that I'm humbled and honored.
15:28And I'm also humbled and honored to
15:30continuously work with the the last
15:32family to ask those difficult questions.
15:34Are we getting it right?
15:36What should we be thinking about,
15:38especially now in our program,
15:39as we think about return of value
15:41return of data, we want to think about.
15:43Is the data that we were turning to
15:46participants important to them and
15:47one of the methods and best practices
15:49of engaging under representing
15:50community and communities and
15:52research is community engagement
15:53in the all of US research program.
15:56We've taken this very important.
15:57We've taken this seriously.
15:58I'm going to read this quote
15:59to you from the CDC.
16:00It's older quote,
16:01but community engagement is the
16:03process of working collaboratively
16:04with and through groups of
16:06people affiliated by geographic,
16:08proximity,
16:09special interests or similar situations
16:11to address issues affecting the well.
16:14Gain of those people.
16:15It is a powerful vehicle for bringing
16:17about environmental and behavioral
16:18change that will improve the health
16:20of the Community and its members.
16:22And I see here this is a triad
16:24that I used to often use.
16:25I have community engagement center
16:27participants as partners as a
16:29driving guide, but also diversity
16:31and researcher workforce and then
16:33citizen scientists as another concept.
16:37So in my research and I'll share a little
16:39bit now about my own research that was
16:41guided by the social ecological model.
16:43I did both implementation science as
16:45well as CBPR, particularly in cancer,
16:47mentioning control and my team.
16:49We actually adopted and adapted this
16:52CDC social ecological model to think
16:54about how do we engage communities and
16:57research so at the individual level,
16:59we engage communities and research by
17:01thinking about issues of health literacy,
17:03about knowledge,
17:04attitudes and beliefs about lung cancer.
17:07And how screening assessed
17:08by patient navigators.
17:10And we also hired patient navigators and
17:12community health workers that reflected
17:14the population of the participants.
17:16We were engaging.
17:17Then we thought about at the interpersonal
17:19level what patients supports and
17:22interpersonal messaging is needed.
17:24That's going to contribute to the
17:25social cultural norms about lung
17:27cancer screening and tobacco cessation.
17:29We saw a lot of this impacted
17:31interpersonal care.
17:32We within the COVID-19 pandemic because
17:34of social distancing and because of our.
17:37Need to limit people in the waiting
17:39rooms and limit people in the exam rooms.
17:41We saw the impact that that had on
17:43how certain populations were able to
17:46make medical decisions because certain
17:48communities rely on that interpersonal
17:50that intergenerational family connection
17:52to make their health care decisions.
17:54But we also engage communities
17:56at the organizational level.
17:57As I stated before,
17:58my research happened primarily at
18:00the FQHC and clinical level to
18:02think about that and so one of the
18:04things that I did is that anytime
18:05I developed a community engaged.
18:07Research project that was going to
18:09be implemented within our fairly
18:10qualified Health Center.
18:11Our community clinic.
18:12I presented that idea to our Community
18:15Advisory Board 1st and I presented that
18:17idea to say hey is the question that
18:19I'm developing of interest to you.
18:21B am I thinking about this question
18:23in a way that would truly drive the
18:25needle forward for the community?
18:27I knew that from a scientifically
18:29rigorous perspective I had developed
18:31that question the way that would
18:33move science forward.
18:33But if we only move science forward in
18:35a way that's going to be publishable.
18:38And move our grants.
18:39For we don't think about moving science
18:40for it in a way that it will ask.
18:42You actually answer questions
18:43that important to the community.
18:45I believe that we've only moved signs.
18:47A portion of the way forward.
18:48And when we think about the policy
18:50level as a as an early stage investor
18:52in our first got into research,
18:53I didn't know that policy was going
18:55to be something that I would address.
18:56I didn't know that I would join the
18:58the Society behavioral medicine and
19:00learn how to advocate advocate with
19:03legislators and other policy leaders
19:04to talk about how that of all the
19:06lung Cancer Research I can do it.
19:08We'll talk about the tobacco
19:10cessation guidelines,
19:11but there's still a corner store
19:12in certain neighborhoods in Chicago
19:14that are selling tobacco products
19:15to youth that are
19:17underage. If there are still policies
19:19in place that allow certain messaging
19:20and signage in certain communities
19:22in Chicago land to differ from
19:24what you see in affluent suburbs,
19:26then that's a policy issue,
19:28so I had to quickly learn that
19:30although I may not do Policy Research,
19:32I wanted to learn.
19:33How can I translate my findings into policy,
19:36language, or work with Policy
19:38Research so they can drive?
19:39Results forward,
19:40so this is just an example that
19:42I show of how we were able to
19:45take Community engaged research
19:46research and and implement it
19:48using the ecological approach.
19:50I also talked about engaging
19:51citizen science in my research.
19:55So this is an example of a project
19:57that I did with citizen scientists
19:59looking at prostate cancer disparities.
20:01So this is actually a map of the
20:02Chicago Land communities in Chicago, IL.
20:05We have 77 community areas.
20:07This map right here is from.
20:08It's a little old, but it does.
20:10Unfortunately, it still looks this way.
20:12The darker areas show
20:14prostate cancer mortality.
20:16The darker orange or brown areas showed that.
20:19On the South and West side of Chicago,
20:22we show that population there's
20:2452 to 93 per 100,000 people that
20:27are dying of prostate cancer.
20:29And if you look at areas over to
20:31the far right in those light brown,
20:33almost ivory areas.
20:34Those are areas such as where institutions
20:37like northwestern and areas that we
20:39call the Gold Coast very affluent areas.
20:41But when you think about where prostate
20:43cancer mortality was taking place,
20:45unfortunately our academic centers
20:46are not in those communities.
20:48Also, we think about.
20:50Where prostate cancer mortality
20:51is taking place.
20:52Those populations don't
20:54have access to in clinical,
20:57clinical trials and or
20:59innovative screening measures,
21:00so I sought to engage the Community
21:02partner called Project Brotherhood to
21:04think about how can we come together
21:06to address the prostate cancer
21:08disparities in the Chicago Land area
21:10to the citizen scientists concept.
21:12So what we did is that we use the
21:14social network theory to engage
21:16eight African American men that
21:18were dispersed throughout the city.
21:20That actually live in population
21:22lives and lived in parts of the
21:24city that actually represent
21:25the highest burden disease.
21:26Because what we understood is that
21:28long after our grant was over,
21:30these men would likely still live
21:32in these community neighborhoods.
21:33So by utilizing the citizens
21:35scientists model,
21:36we were actually increasing
21:37the Community knowledge and
21:38agency within those communities.
21:40So for a period of six weeks,
21:42we engage African American men
21:44and citizen scientists to train
21:46them on everything.
21:47In terms of what is a clinical trial,
21:49why is it important to
21:51participate in clinical trial?
21:52Prostate cancer screening.
21:53101 questions to ask your doctor.
21:55We even talked about things like the IRB,
21:57the Institutional Review Board with
21:59these men and research funding
22:01because after that training of
22:02these men and citizen scientists,
22:04we then asked them to engage their
22:06social networks to allow us to recruit
22:08from their social networks for a
22:10prostate cancer screening study.
22:12Because I'll tell you when I first
22:15started my research career and I
22:17told a former mentor at the time
22:19that I was interested in doing
22:20cancer disparities research.
22:21Particularly focused on minority men
22:23with the focus on African American men.
22:25I was told that a it would be
22:27very difficult to engage African
22:29American men and research.
22:30I was told that it be very difficult
22:32to power my studies in a way that
22:34would get rigorous findings,
22:35and I was even told that it'd be
22:37difficult for me to get funding in
22:39those areas because of those many things,
22:41but through collaboration with
22:42community through adopting this
22:44citizen scientist model, we were able
22:46to meet and exceed our enrollment.
22:48We were also able to understand
22:50how to engage African American men.
22:52Research we did innovative things that
22:54were simple to me but innovative to
22:56others by making sure that our population,
22:58the researchers, reflect the population.
23:00Our partner with Doctor Adam Murphy.
23:01After the American urologists,
23:03that was the one of the also
23:05the lead PI's in the study,
23:06my My research lab.
23:07My students.
23:08I partnered with the medical school to
23:10engage young African American men that
23:12were interested in health disparities
23:13research to join my research team.
23:15One of those young men is now at
23:18Cook County Hospital as a urologic.
23:20The third year urology resident,
23:22another one that asked them.
23:23Looking man that was part of my lab
23:25is now gonna be going off to Tulane
23:26University to get his PhD because it
23:28was important to create a pipeline
23:30of early stage investigators that
23:32reflected the population that cared.
23:33The greatest permanent disease.
23:35And from this citizen scientist model
23:38we were able to address things address
23:40this concept of medical mistrust.
23:42So we asked these citizen scientists
23:44about medical mistrust and I'm going
23:46to read a quote from one of the
23:47citizen scientists that really dispel
23:49this myth of why certain populations
23:51don't participate in research.
23:53Because there's a myth that some
23:55populations don't participate
23:56only because of medical mistrust,
23:57but what we began to find out was that
24:00medical mistrust can be high and can exist.
24:03But populations can still
24:04participate in research.
24:05It's just a matter of a acknowledging
24:08that that mistrust and then begin to do
24:10things to slowly dismantle the systemic
24:12reasons why that mistrust exists.
24:14One of the participants said to me
24:16just because I don't trust the system
24:18doesn't mean I won't participate
24:19in research because I trust y'all
24:21to a certain extent and he let
24:22me know in a joking way.
24:24Said Kareem,
24:24you being a part of the
24:26system at a big university,
24:28I'm going to have a certain level of of of
24:31healthy skepticism about the work you do,
24:33but that doesn't mean that you
24:35and your team shouldn't put in
24:36the work to engage me in research
24:38because I understand the importance
24:40of participating in research and
24:42through this citizen scientist
24:43model we were able to adapt it.
24:45We started off from prostate cancer.
24:47We're able to adapt it from prostate
24:48cancer to engage African American
24:50men and colon cancer to right
24:51before I left the university,
24:53we adapted it for lung cancer.
24:55And this model taught me that when
24:57you intentionally engage communities
24:58in the development of your research
25:00question and you began to in a
25:02head on way in a respectful way,
25:04address why certain populations
25:05have not been engaged in research,
25:08you really begin to dispel some
25:09of those myths about why certain
25:11populations don't participate,
25:13because in all of my research career,
25:14I'll be very honest with you.
25:15I've never had an issue of enrolling diverse,
25:19diverse participants in research.
25:20Why, because a I've conducted
25:23those studies in place.
25:24Where populations get their
25:26health care because place matters.
25:28So going to communities that are diverse
25:30and engage with those communities.
25:32The other thing is that I was present
25:34in the communities before I need to
25:35engage in research and I'm sure you all
25:38see that in your child's syndrome is
25:39that if you want to engage with parents,
25:41if you want to engage in research,
25:43you must build relationships
25:45before that research question,
25:46and you also must be present
25:48in those communities after your
25:49research question is over,
25:51I cannot tell you the many of
25:53church basements that I've been in.
25:54Talking about prostate cancer
25:56on Father's Day,
25:57but many of pulpits that I've been
25:58talking that I've been in African
26:00American churches talking about breast
26:02cancer screening on Mother's Day,
26:03and I've also shared my own death
26:05experience with with with the
26:06community to let them know that when
26:08I talk about cancer disparities.
26:10I'm not just talking about it
26:11from a scientific perspective,
26:12and I'm also talking about it from
26:14my lived experience losing my mother
26:15at a very young age to breast cancer.
26:17My biological mother then,
26:19unfortunately,
26:19losing my bonus mom to lung cancer
26:21at the height of the pandemic and
26:23just last year losing my brother
26:24to colorectal cancer.
26:25So as I was engaging those African
26:27American men a year and a half
26:30ago in colorectal cancer from
26:31research program on citizen science,
26:34I didn't have to think about what does
26:35it mean to engage after the American
26:37men and colorectal cancer screening.
26:39I have my own lived experience to draw from,
26:42and I think as researchers,
26:43we have to do more of that.
26:44We have to be willing to bring our
26:46full and our own authentic selves
26:47to this work so that we can have
26:49relatability to the communities
26:51that we're serving so that we can.
26:53They can see that the questions that
26:54we're asking are not only important to.
26:56US as researchers,
26:57but they're important to us as individuals.
27:01And in the all of US research program,
27:02we've also been intentional about
27:04this concept of community engagement.
27:06And there's a chief engagement officer.
27:08I'm very proud of the engagement
27:10ecosystem that we've developed as a program.
27:13Our engagement ecosystem consists
27:14of our frontline staff,
27:16people that you often forget about
27:18those frontline staff that check
27:20the participants in that check,
27:21check the patients in that actually
27:23may become participants.
27:24We actually conduct research
27:25and focus groups with.
27:26Those populate those staff
27:28members to say you know.
27:29How could we be doing this?
27:30Already better does the is this study
27:33diverting from your normal standard of care?
27:35If so,
27:36how can we make it better?
27:37We partner with Community partners
27:39and and national organizations.
27:41We have partnered with the organization
27:43called Pignus Pixis Partners to have a
27:45community provider Gateway initiative.
27:47We have innovative engagement awards.
27:49We have participant engagement core party
27:51with the National Library of Medicine.
27:52But what I want to talk about next is
27:55the the fact of our intentionality and
27:58including participants as partners.
28:00So since the beginning of the program,
28:02the all of US Research program has been
28:04intentional in ensuring that participants
28:06are actually guiding the work that we do.
28:08So this is an example of over our 47
28:10Member participant advisory boards
28:12that are actually participants.
28:14This is much bigger and and more
28:16intentional than the Community Advisory
28:18Board because these participants
28:20actually sit at various decision
28:22making levels in the program.
28:24Some of them serve on our IRB
28:26Institutional Review Board.
28:27Some of them serve on our steering committee,
28:29some of them, many of them.
28:30We'll serve in our program's ability
28:32to develop ancillary staff studies from
28:34our from our data and our participants
28:36and ambassadors reflect the diversity
28:38of the population that we serve.
28:40For example,
28:41participant Ambassador Joyce Winkler,
28:43while highlight here is from South Carolina,
28:45and Joyce was a nurse for over 40 years,
28:48holding positions,
28:49administrative and management,
28:50and then teaching and until
28:52retirement in in 2018.
28:53Joyce is bathing based in Columbia,
28:55SC at a fairly qualified Health Center,
28:57and I had the pleasure of
28:59meeting Joyce back in 2017.
29:012018,
29:01when she was working in the FQHC
29:03and one of the quotes that Joyce
29:05gave us recently that she said the
29:07mission is so near and dear to me as
29:09it relates to transformative health
29:10and the potential to impact on the
29:13potential impact on individuals
29:14and families and communities.
29:15We are all interconnected in some way.
29:18So imagine the impact that participant
29:20ambassadors like Joyce have when
29:22they go out to talk to the computer,
29:23their communities,
29:25about the importance of diverse
29:27participation in research.
29:29And as a nurse,
29:31Joyce also brings that that
29:33understanding of different career,
29:34different research types of the program.
29:36Joyce lets us know like what it
29:38was like for us,
29:38for her to be a frontline staff
29:40working with participants.
29:41And she brings that lived experience
29:43to the program as well.
29:45And we think about I talked
29:47earlier about this.
29:48I'm really excited about this.
29:49Just last week we had our second
29:51annual minority Student Research Symposium.
29:53What we call MSRM and our science
29:55date because another thing that we're
29:57committed to in the program is not
29:59just diversifying the participant pool,
30:01but also diversifying and engaging.
30:03Diverse cohort of research.
30:04And these are just four examples
30:05of of the research scholars that we
30:07have through the all of US research
30:09program we're partnering with.
30:10Historically black colleges and
30:12universities HBC US and minority
30:14serving institutions MSI.
30:15To ensure that we give students
30:17from across the country access an
30:20opportunity to engage in our database
30:22so that they hopefully one day can
30:24become interested in genomics research.
30:26Across the the wide spectrum of
30:28genomic research and hopefully they
30:29can contribute to diversifying
30:31the research tool.
30:32And now I'll I'll end with.
30:33I'll spend the next 5 minutes or so
30:35talking about our pediatric enrollment
30:37plan because I do want to leave some time
30:39for discussion and questions, but we are.
30:42I'm excited because the all of US
30:44research program is really at this point.
30:46Thinking about how we are uniquely
30:48positioned to address the following
30:50areas of of health disparities.
30:52Because we think about pediatric health,
30:53pediatric health disparities,
30:55physical environment, exposures,
30:56social environment and
30:57longitude and biomarkers.
30:59So thinking about children that are living
31:01with asthma in certain communities.
31:02We are equipped to ask questions not just
31:04about the biological aspect of asthma,
31:06but about the physical and lived environment.
31:08We're equipped to think about this,
31:10the school,
31:10the learning environment that
31:11those youth live in,
31:12but then also think about what
31:15and connect that information to
31:17longitudinal biomarkers that may be
31:18present in some of those children.
31:21And our programmatic objectives.
31:22For pediatric enrollment,
31:24we're hoping to enroll our first
31:26pediatric cohort in early 2023 and
31:29our objectives for this year is that
31:30we're underway to hire Directive,
31:32director of Pediatrics,
31:33and then we're also on our way
31:36of approving our IBO our IRB
31:38protocol for pediatric enrollment,
31:40and our approach is to take a
31:42phase family based approach to
31:43recruitment which I think is really a
31:45conversation that I hope to to engage
31:47you all in over the future because
31:48we want to begin with the pilot.
31:50And scale up,
31:51we're gonna enroll participants,
31:52hopefully by age,
31:54birth to six years,
31:557 to 12 and 13 to 17.
31:57But even thinking about this
31:59concept of family based diet
32:01or triad enrollment for birth,
32:03that can be but participants can be
32:04enrolled even without a parent or guardian.
32:06Also being enrolled.
32:07But I'm excited about the pediatric
32:10enrollment because that really will
32:12allow us to collect this longitude
32:14information over the life course.
32:16But even prior to our
32:18pediatric enrollment launch,
32:19because the all of US research program does
32:21interface with electronic health records,
32:23we actually have legacy pediatric
32:26data that's available from the
32:28EHR from as far back as 1980.
32:30So we have about 19,729 participants with
32:33what we call legacy pediatric EHR data.
32:36And we have projects that are underway
32:38already in our database that are
32:41looking at different questions that
32:43are related to this legacy information.
32:46On pediatric projects being studied
32:47in the research workmen's currently
32:49are looking at type one,
32:50diabetes, transitions,
32:51childhood obesity and also
32:53metabolites and cancer,
32:54just to name a few.
32:57So that is what I wanted to
32:58talk to you all about today.
33:00I want to thank you for your
33:01time and your attention,
33:02and I want to open it up to questions
33:04right now and hopefully this will
33:05not be my last conversation with
33:07you all as we can think about how
33:09can we get you all excited about our
33:10database and how it can hopefully
33:12be a tool that you all will be able
33:14to use both in your center and in
33:15your own research endeavors.
33:25Thank you so much,
33:26Doctor Watson and really that was a
33:29wonderful overview of your extensive
33:31experience and community engagement.
33:33Really a wonderful how to guide and you know,
33:37every time I hear about the all of U.S.
33:38court, I can't hear about a new
33:40component that I wasn't aware of.
33:42I wasn't aware of the legacy pediatric
33:44data and I just want to emphasize for
33:46anyone here in the Community that you know.
33:48All it takes is just to to register online.
33:50To be able to use the resource and
33:53that Yale already has a data use
33:55agreement in place and so essentially
33:58we have ready access to these data.
34:01For anyone that would want to use them.
34:02So I'd encourage anyone notice
34:04to unmute if you're on zoom,
34:06or if we've got any questions
34:08in the room for Doctor Watson.
34:20While we're waiting, you did address.
34:21My first question is that I was
34:23hoping that researchers would know
34:25that I want to talk about the the
34:27various levels of data that we have.
34:29Currently we have 3 levels of data.
34:31We have the publicly available data
34:33that anyone can get access to,
34:35and as a former faculty member
34:36in the School of Public Health,
34:38I actually was excited about the publicly
34:40available data because it's just a
34:42large secondary data set with with
34:44predominantly descriptive statistics,
34:45but that young researchers
34:46can use like I would.
34:48I was using it to teach in the MPH courses,
34:50right?
34:50You think about students who are
34:52learning how to do secondary data
34:53analysis that publicly available
34:55data is important for that,
34:56but also for communities for
34:58communities that want to know.
34:59You know what is?
35:00What does the all of us program look
35:02like for this particular disease that I'm
35:04passionate about that I'm interested in?
35:06What does the data set look like?
35:08How many participants in the all of
35:10US program are impacted by cancer?
35:11How many are impacted by low birth weight
35:15preterm preterm infant deliveries?
35:17How many participants are
35:18impacted by diabetes?
35:20That's information that you can get from
35:22our aggregated publicly available data set.
35:24But then there's the registered tier,
35:26the registered tier.
35:27If you're affiliated with
35:28Yale College of Medicine.
35:30Yellow already has a data use agreement,
35:32so as a researcher at Yale,
35:34you should have pretty easy access
35:35to be able to go and register to
35:37get access to that register tier
35:39at that register tier.
35:40You can get more detailed information
35:42that can begin to look at the EHR data,
35:45pull information from the electronic
35:46health record you begin to look
35:48at data from our social terms of
35:50health survey even though over
35:52the 100,000 participants that
35:53completed our COVID-19 cope survey,
35:55you can get access to that date.
35:57You can get access to data
35:58around a myriad of questions.
36:00Physical measurements how many patients
36:02we have in our database to have elevated
36:05blood pressure to how many patients
36:06we have that are 19 to 25 you you know,
36:09while it's young adulthood,
36:10but that may be a really important
36:12data set for you to ask to have
36:13may have elevated blood pressure.
36:15Elevated blood sugars that's
36:17in the information,
36:18for example,
36:19and even wearable date we have about
36:211411 thousand participants who have
36:23participated in the Fitbit pilot
36:25that have wearable data for us.
36:27But then there's a genomics that we recently.
36:30At least 100,000 participants
36:32genomic sequence data to researchers
36:34didn't get access to that leg,
36:36and that's at the controlled
36:38tier and at the control tower.
36:39You can also get 3 level zip code
36:41information and as a researcher,
36:43that information was very important
36:44to me because I wanted to be able to
36:47geocode and think about how someone's
36:49neighborhood where they live could be
36:51impacted by certain health conditions.
36:56Fantastic and I, you know I.
36:57I just wondered if you could speak a
36:59little bit to the recruitment strategy
37:01because I know with large initiatives
37:03such as the UK Biobank in general,
37:05you know there is.
37:06There's been, you know,
37:07kind of more well educated,
37:09more well off people that have
37:11just naturally gravitated towards
37:13these large scale initiatives.
37:15I'm wondering what procedures are
37:16in place to ensure that that all
37:19of us remains and representative.
37:21I thank you so much for that question.
37:23I think one of the biggest things that
37:25we did to ensure diverse participation
37:27is having diversity in our recruitment
37:29and in our enrollment sites.
37:31So we for example we have groups of
37:33clinics like fairly qualified health and
37:36you've heard me talk a lot about FQHC's
37:38fairly qualified health centers and I
37:40talk a lot about things because they're
37:43historically underrepresented in research.
37:44Over 25% of our nation's most underserved
37:47get their care at fairly qualified health
37:49centers and a large portion of them.
37:52It's just they get their treatment and care.
37:54FQHC's are also racial and ethnic
37:56minorities or populations with carrying
37:58huge disparities in chronic conditions.
38:00But FQHC's are historically
38:02underrepresented in research,
38:04so at the onset of the all of
38:06US research program,
38:07we actually piloted out recruitment
38:09and enrollment at FQHC'S to ensure
38:11that we ask questions of how do
38:13you build up research capacity and
38:15interest at Community health centers?
38:17So that's one thing,
38:19and that pilot allowed us to
38:21grow the the the.
38:22Both of our FQHC season enrolled to date.
38:25I believe we have over 7 fairly
38:27qualified health centers enrolled,
38:28including a new FQHC in Hawaii
38:30that allows us to think about the
38:33engagement of agent of of Pacific
38:35Islanders and research study.
38:37Another population that has been
38:40historically underrepresented research but
38:41also we have a lot of academic medical
38:44centers that serve diverse populations.
38:46So we have packing the medical centers that
38:48may be more brutal located that are engaged.
38:51We have some active Medical
38:52Center in urban areas.
38:53But when I look at the NLST,
38:56the national inspiring trial,
38:57which is a study I was really proud of.
38:59But we could learn a lot from studies and
39:01thinking about where are those sites located?
39:04And there has to be intentionality
39:06in that recruitment of those sites.
39:08And you have to think about that.
39:09So if you're launching a study you want
39:11to do it within a community setting.
39:13There may be some groundwork and
39:15relationship building that you may have to
39:18start long before you launch that study.
39:20You may think about how do I
39:22ensure this community has access?
39:23When I think about,
39:24you know the resources at that at
39:26that Community Center within that
39:28Community setting and some other
39:30things that we're doing we're doing
39:31in the study is we call it recruit to
39:34retain when we recruit a participant.
39:36We think about what were some of the
39:38things that that were needed to engage
39:40and or recruit that participant,
39:41for example,
39:42in order right now to log onto our website,
39:45mean to enroll in our study,
39:46you have to have an email address.
39:48Well,
39:48if if a research coordinator has to
39:51help participant get an email address, then.
39:54It may.
39:54You may think that I I often tell
39:57the research coordinator.
39:57You may have to spend more time
40:00engaging that participant if you
40:01had to set them up with the email
40:03address. You may need to call
40:04them 30 days after enrollment,
40:0560 days after enrollment,
40:07six months and even 12A year after
40:09enrollment to continue the engagement
40:11with that with those participants.
40:13And somebody said Kareem that
40:14requires a lot of effort,
40:16a lot of FTE, a lot of times it does.
40:19I'm not saying that in engaging and
40:22recruiting and retaining diverse populations.
40:24It's easy, but it's essential.
40:27And when you think about how do you
40:29research studies up at the onset,
40:30we have to think about resourcing
40:32studies as well as researchers
40:34appropriately to allow them to do
40:36this type of intentional engage.
40:40Fantastic.
40:49And I you know that there's a lot of
40:51people here that are doing a lot of
40:54interesting research in terms of child
40:56development and in terms of, you know,
40:59trying to understand the developmental
41:01influences on health and well being.
41:03And so if people are interested in trying
41:05to get involved in the pediatric cohort,
41:08or maybe even suggesting measures,
41:10what is the process for for for
41:12trying to kind of engage with
41:14the all of us pediatric cohort?
41:16That is a great question.
41:17So one of the things this is the
41:19perfect time for us to be having this
41:20question about suggesting measures.
41:21You can send an email to.
41:29Joinjoinallofus.org if you go to
41:31joinallofus.org the research allofus.org
41:32that will take you directly to a
41:35way that you can send information
41:36and as a researcher when you send
41:38an information let us know go.
41:40I would encourage researchers
41:41from this Community to 1st go to
41:43our publicly available data set.
41:44Kind of browse around and look at
41:46some of the type of data that we're
41:48collecting or even going and register and
41:50to see what type of data we're collecting.
41:52And if you don't see data
41:54that we're collecting,
41:54that's going to be important to the
41:56research that you're conducting.
41:57Send this a message and say you know,
41:59I know it's early on and you are thinking
42:01about your pediatric enrollment.
42:02Have you thought about this type of question?
42:05Have you thought about these
42:06types of surveys?
42:07And but the other beautiful opportunity that
42:09we have is pilot research opportunities.
42:11There will be opportunities for
42:13researchers to develop ancillary
42:15studies from our data set as well,
42:18but they'll be able to pose.
42:19And we're about two years out from
42:21that ancillary study development.
42:22But that's also something I'm excited about.
42:24But we're at a really important time.
42:27When we think about our social
42:29terms of health study that was
42:31helped to develop by a researcher,
42:32doctor Cheryl Clark from Boston
42:34Medical University,
42:35developing that that that that social terms
42:37of health survey and doctor Clark said,
42:39you know,
42:39as an intern and she wanted to
42:41make sure that we were collecting
42:42measures that would intersect with
42:44the biological information that we
42:45were collecting that could really
42:47begin to look at some of those health
42:48disparities that we're seeing.
42:53So a lot of people taking notes as
42:54you're trying to as you were mentioning
42:56that email address, so I might
42:57I'll put it back up again,
42:59and I'm sorry I'll say it slower.
43:00The probably eat the easiest place to go
43:03to is probably all of us that nih.gov.
43:06That's probably the most simple website
43:11againthatsallofus.nih.gov. Thank you.
43:11Someone put it in the check.
43:14Very, very efficient.
43:16That's wonderful. And you know,
43:18I I know I've been having the question,
43:20so if anyone else wants to jump in,
43:22please feel free to unmute and and
43:24ask questions as obviously I just I'm
43:27fascinated by the resource and one other
43:30very critical component of research is
43:33funding and so do you know if there
43:36will be rfas or what the will there.
43:39Will there be specific competitions to
43:41try and encourage use of all of us and?
43:44Can we get any insight scoop
43:46that is a great question and you
43:48know at at the NIH, we're not.
43:50We're not able to talk about the potential
43:52for RFA's before before they come out
43:55before they're publicly available,
43:56but what I can say is that we have
43:58I can think about our Community
44:01grants that we've given we've given
44:03over over 100 awards to Community
44:05partners to engage in this research,
44:08and we are actively thinking about what
44:10resources are needed for researchers to
44:12engage with the use of our database.
44:14As well, but I also want to
44:16encourage researchers.
44:17While the all of US program
44:18is thinking about that.
44:19But if you're doing research with a different
44:21institute and a center at the Oliver,
44:23I mean at the NIH,
44:25think about using the all of US
44:27research program database as a data
44:30set for your research application.
44:31For example,
44:32if you're applying to the NIH to the NCI,
44:35the National Cancer Institute,
44:36and you're looking at certain
44:38pediatric cancers,
44:39feel free to to write into your
44:41proposal that we are proposing
44:42to use for one of our aims.
44:45Or from some of our background data.
44:46The all of US research program data set.
44:48We are encouraging people,
44:50no matter where you're applying to,
44:52for your funding to think about
44:53using all of US research data set.
44:55But we are thinking very intentional
44:57about what resources are needed.
45:04And if I may ask just one more question,
45:06you know I I was noticing on your CV that
45:09you were part of the lead for community
45:12outreach and engagement of your CSA.
45:14Basically the which many here
45:16people here would be able to
45:18know the clinical investigation,
45:20which is our kind of CSA center here at Yale.
45:23And then obviously you've had
45:25a meteoric rise now to chief
45:26engagement officer of all of us.
45:28I was wondering if you could tell us
45:30about critical points in your transition,
45:32particularly for the.
45:33The trainings that are on the line
45:35and what we're kind of very pivotal
45:37moments as you as you moved from from
45:39from different stages across your
45:41career that you might be able to share
45:42with the trainees in the audience.
45:44That's a great question.
45:46One of the critical moments I would
45:48say is meant for me being mentored by
45:50having a really intentional mentor.
45:53My idea? My postdoc with Doctor
45:54Robert Wynn who's now the cancer and
45:57director at the VCU Massey Cancer
45:58Center and and during my postdoc,
46:00even even the development of my postdoc,
46:02was a leadership postdoc.
46:04Which is not heard of.
46:05You don't hear many postdocs
46:07that are actually intended on
46:08developing you as a leader.
46:10So Doctor Wynn had my postdoc
46:11focus on both my leadership
46:13development and cancer disparities,
46:15as well as my cancer disparities career
46:17and as mentors as faculty and staff.
46:20You actually have potential
46:21agency to develop the type of
46:23postdocs you want to develop,
46:25so be creative and innovative when you
46:27develop those postdocs for your students.
46:28So that was a huge piece of it.
46:30But the other thing was that while
46:32it may appear to be a meteoric rise.
46:34In my my world I have been doing community
46:37engaged research for over 23 years.
46:39Since the onset of my research career
46:41and it was truly that commitment to
46:44community engaged research doing that
46:46research for and with communities instead
46:49of on communities that really allow
46:51me to gain that trust in the insight.
46:53For example,
46:54the work that I did with citizen
46:56science and African American
46:57men were project brotherhood.
46:59I had a partnership with that community
47:01based organization for seven years
47:03before we enter into a research there.
47:05Seven years, that means that I was
47:07coming to health fairs with them.
47:09Grassroots organizations with them,
47:11basketball tournaments.
47:13With them, you name it.
47:14And I was.
47:15And I also looked at project
47:17Brotherhood as being just as
47:18important to my training and my
47:20education as my tenured faculty work.
47:23It was just important for me to
47:24learn from the community as it was
47:26for me to learn from those basic
47:27and translational researchers,
47:29and I think that's something
47:30we forget to tell researchers.
47:31And it was also my role and my work
47:33with Community campus partnerships.
47:35Health CCPH and National Organization
47:38International Organization,
47:39which I was the board chair that
47:41allowed me to help develop Internet
47:43national guidelines for community
47:45engaged research and I worked with
47:47the all of US research program.
47:48Actually at the onset of its
47:50community engagement work with
47:52Doctor Consuelo Wilkins out of
47:54Wilkins out of Meharry Vanderbilt,
47:56who was one of my mentors as well.
47:57So I've been very blessed to have
47:59a group of mentors that have been
48:02doing this work for several decades.
48:04That actually brought me up in the ranks.
48:06And brought me alongside even
48:07things that Doctor Lynn did.
48:09That was things like bringing me
48:11to the NIH as a mentor review.
48:14It changed the way I wrote grants
48:16and many researchers.
48:17Many of us that are funded through the night,
48:18and we get invited to the NIH grant review.
48:20We don't even know that we can
48:22bring a mentee
48:23on that grant. Review with us when when
48:25you get invited to review a journal
48:27publication and that there's an opportunity
48:29for you to have that a mentor review.
48:31Take it, give that training of yours,
48:33opportunity to review that paper.
48:35Give that training. Of yours,
48:36an opportunity to come to the NIH review
48:38or any other grant review, you know,
48:40I just gave a talk at our minority Student
48:43Research symposium with Doctor Wynn,
48:45so it was a talk with
48:47Doctor Wynn is my mentor,
48:48and then I had Alexander Kimbro one
48:50of my mentees with me, and we talked,
48:52and I talked about the importance
48:53of being mentored and being,
48:55and and and being a mentee,
48:57and one of the things that Doctor
48:59Wynn talks about is the difference
49:00between mentorship and sponsorship.
49:02And sponsorship is actually
49:03giving someone a seed.
49:04The table when you have received the table.
49:07Because there may be places where
49:08I would never have been invited.
49:10If Doctor Winden say,
49:11you know what I'm gonna turn down this talk,
49:13but I'm gonna let my trainee
49:15Kareem come and give this talk
49:16and he talks about the level of
49:18vulnerability it takes to be a mentor,
49:20the level of trust it takes to be a mentor,
49:22but also the intentionality it takes.
49:26It's representation, mentorship,
49:27inclusion, key themes we have and
49:30and intentional, and I can't
49:32and diversity and inclusion and
49:34representation does not just happen.
49:36You have to be intentional with.
49:38We we did have one question come in
49:42from Alec, Alex Kurtzman and will
49:44recruitment of children into all of us
49:46provide for linkage of children's data
49:47to their families and extended families.
49:49I guess. How far will those
49:51electronic health records extend
49:53it? Will it in terms of linkage to it
49:55you I won't say that provide linkage
49:57but whatever in that child's electronic
50:00medical record is what you have access to.
50:03For example, say what if in that child they
50:05have a history of type one diabetes and in
50:07their their record it also talks about?
50:09Other family members.
50:10You will then be able to get a
50:13disaggregated report about the family
50:15history of that child. You know,
50:17history of diabetes and their family,
50:18but not necessarily access
50:19to that family's records,
50:21because you could only get
50:22access to records to someone.
50:23For someone who has consented or
50:25to a parent who has consented for
50:28their their child to be in study.
50:30And I also saw a question
50:31about parallel data.
50:32Yes, the same information that we're
50:34collecting on adults, for example,
50:36biospecimen information information,
50:38such example height, weight,
50:40blood samples will be collected in urine.
50:42Samples were more than likely be collected
50:45on on youth as well as saliva as well,
50:47and then that information from
50:49Biosample specimen collection
50:50will be available as whether as
50:52well as the genetic analysis will
50:54be available to researchers too.
50:58That's incredibly exciting.
50:59Well, you know Doctor Watson.
51:01I just wanted to really thank you
51:02again for sharing a really amazing
51:04how to in terms of engaging community
51:06and getting the community involved
51:08in research and also for sharing
51:09your why and when you talked about
51:11your family history and and really
51:13have that motivation your science.
51:15So we really appreciate you being
51:16with us today and we look forward
51:19to continuing this conversation,
51:20hopefully here in New Haven at some point.
51:22So thank you. Once again.
51:23Yeah, we hope to come back and do a data
51:26demonstration project for you. We'd
51:28love that you again.
51:30Thank you all.