Child Study Center Grand Rounds 04.05.2022

Transcript

• 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.