The Colors of COVID-19: Addressing Health Disparities During a Global Pandemic

September 18, 2020

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September 16, 2020

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00:00Thank you very much for joining us
00:02this evening for what I am quite
00:04sure is going to be a terrific talk
00:06and then conversation afterwards.
00:08This is the kickoff session for
00:10the program for Biomedical Ethics
00:12Evening Ethics Seminar series here
00:13at the Yale School of Medicine,
00:15and we have sessions once or twice a
00:18month throughout the academic year,
00:19and you can actually see at
00:21the bottom of this slide.
00:23You can see the next few
00:25talks that are coming up.
00:26We have saving Hildebrandt from Harvard.
00:28We have Trish apprentice from Melbourne.
00:30And then amorous Kaiser from Johns
00:32Hopkins as our first three talks.
00:34And I think the one after that
00:36is going to be Peter singer,
00:38who was going to be a broadcasting
00:40to us from Australia.
00:42Also,
00:42we've got a tremendous lineup for the year.
00:44Were delighted that you're here.
00:46Please join us for as many
00:48as your time and interests.
00:49Allow the way these sessions work
00:51is we have about a 45 minute talk
00:54by a visiting faculty member,
00:56followed by a 45 minute conversation.
00:57I'm going to invite you to
00:59send questions via chat.
01:01And then I will share the questions
01:03with Professor Thomas after his talk is
01:05over and how moderate the conversations.
01:07That way we do have a hard stop at 6:30.
01:10So if you're wondering,
01:11when do you get out?
01:12It will stop at 6:30, so let me
01:15apologize now to whoever had father.
01:16Great question at 629 'cause
01:18I probably won't get to it.
01:20I'm sure I won't get to all of
01:22your questions,
01:23but it should be a great night.
01:25Thanks for being here and I'm a night
01:27now to introduce our honored guests.
01:29Stephen Thomas, PhD,
01:30is professor of health policy and management.
01:32And the director of the Maryland Center
01:35for HealthEquity at the school of
01:37public health at the University of Maryland,
01:39College Park.
01:40Doctor Thomas is one of the nation's
01:42leading scholars on community
01:44engaged research designed to reduce
01:46and ultimately eliminate racial
01:47and ethnic health disparities.
01:49He completed his undergraduate
01:51degree at Ohio State University.
01:53Excuse me.
01:53V Ohio State University and his PhD from
01:56southern Illinois University in Carbondale.
01:59Doctor Thomas has also earn certificates
02:01in bioethics from Georgetown University and
02:03the University of Washington in Seattle.
02:05He's a principal investigator of the NIH
02:08and I am HD center of excellence on race,
02:11ethnicity,
02:12and health disparities research.
02:13His research and collaborator doctor
02:15doctor Sandra Quinn is recognized as
02:17one of the scholarly contributions.
02:19Excuse me,
02:19his research with doctor Quinn
02:21is recognized as one of the solid
02:24contributions that led to the
02:251997 presidential apology for the
02:27syphilis study done at Tuskegee.
02:29I think many, perhaps most,
02:31people on this call on remember that time,
02:34and I didn't realize until.
02:36Until this that doctor Thomas
02:38was instrumental in that.
02:39Doctor Thomas believes that building
02:41bridges of trust are essential
02:43to creating healthy communities.
02:45In this talk he will discuss
02:46how the principle of
02:48Justice can help illuminate the
02:50implications for recruitment and
02:52retention of black human subjects in
02:54COVID-19 clinical trials research.
02:56The talk is the colors of COVID-19
02:59addressing health disparities
03:00during a global pandemic.
03:01Our guest is Professor Stephen Thomas
03:04and thank you so much for doing this.
03:07Forest doctor Thomas an welcome to Yale.
03:09It's an
03:10honor and a pleasure to be here.
03:12I actually was going through my emails
03:15searching for something and I put in
03:18the word Yale and believe it or not,
03:20I've been to your campus a couple times.
03:22I want to commend the work that's
03:25being done there around training
03:27the next generation of scholars.
03:29And I think that this form itself
03:32and the prestige of your institution
03:35hopefully can help move the needle.
03:38I'm in a moment here.
03:40I'm going to share my slides,
03:42but as you can see with
03:44this virtual background,
03:45I have a rainbow over my head every
03:47single day seems to bring bad news,
03:50but at the end of the day I do
03:53believe we will do the right thing.
03:56And so I do have hope even in the
03:59midst of what we're going through,
04:03I'm reminded reminded that
04:05sunshine does follow the rain.
04:08I hope we have a robust conversation
04:11and honest conversation.
04:13A Frank Conversation.
04:14This is no time to be anything
04:18but authentic people are dying
04:21an it is about saving lives.
04:24I had Could never have imagined that
04:27the United States would be in such bad
04:30shape as it relates to the COVID-19 pandemic.
04:34An early in the process when
04:36discussions were being made about
04:38the underlying conditions,
04:40you know the diabetes heart
04:42disease of the asthma,
04:43the list goes on,
04:45and they are all part of the
04:47health disparities that we have
04:50known so well and document it.
04:53Anne,
04:53yet in the early days of the pandemic,
04:57this data was not presented with
05:00racial demographics or zip codes.
05:03New York Times did a major story on
05:06the racial breakdown of covid cases,
05:08and to get the data they had to actually
05:11file a lawsuit against Central Disease
05:14Control to have access to the data.
05:17So even as we speak right now,
05:20it is not universal that we're getting the
05:22data by all the demographic characteristics,
05:25so I'm going to take a chance
05:27here and hit a few buttons.
05:30Everybody out there in cyberspace.
05:32Please cross your fingers.
05:34I'm gonna share my screen an
05:38hope that all of this works.
05:42And. If you see an image.
05:47Full screen there we go.
05:50An I'm reminded every semester and we're
05:53in our second week of school here.
05:55Actually,
05:55the beginning of our third week,
05:57but our first week in a blended
06:00with in person.
06:01But every year I'm reminded that the
06:04freshman class is always the same age,
06:06and I'm the one that's older and
06:09I've realized overtime that some
06:11don't know who this is in this image.
06:14And this was actually.
06:16Produced by a young undergraduate
06:18student when we were celebrating the
06:21anniversary of the March on Washington.
06:25And I've kept it in my slide deck ever since.
06:28And it's this that realization that
06:29if you grew up in another country,
06:32you may not be familiar with the history
06:34of civil rights in the United States.
06:36And even if you grew up in this country.
06:40You may not be familiar with it,
06:42and I think it's very important that
06:44we keep in front of us how we have
06:47made social change in this country
06:49and it is movements like the civil
06:51rights movement that is vital for
06:53the lessons we need right now.
06:55You may not agree with everything
06:58you're about to hear today,
07:00so it is about a conversation.
07:02There's my email address and I'm hoping
07:05that this is the beginning and not an end.
07:09So, um. My commercial here.
07:13As I mentioned,
07:14I'm the director of the Mail in Center for
07:19HealthEquity joined the faculty in 2010,
07:22so it's This is actually our
07:2510 year anniversary.
07:27And in fact,
07:28there were five members of my
07:30research team where we were at the
07:33University of Pittsburgh and all
07:35five of us were recruited for one of
07:38the largest cluster hires in history
07:40of the University of Maryland.
07:42As part of the school public health.
07:44The images you see around this slide
07:46are the examples of the community
07:48engaged research infrastructure
07:50we have built,
07:51and I'll talk about in this
07:53theme of building bridges,
07:55building trust,
07:55building healthy communities is when
07:57I'll come back to time and time again.
08:00It is unfortunate,
08:01but true that if you were to draw
08:04a 2 mile radius around many of our
08:06academic Health Science Center,
08:08some of the most prestigious
08:10academic Health Science centers,
08:12you'd find some of the worst
08:14health statistics in the region.
08:16How how can that be?
08:18How can it be that you can
08:20live in the shadow?
08:21Of a medical wonder world.
08:24And still die before your time.
08:27That's why we do health disparity research.
08:30And in our center we do that
08:34from a philosophical foundation
08:36rooted in social justice.
08:39And I think for my students I
08:41have to point this out that
08:44social justice is not a slur is
08:46not something to be ashamed of.
08:49Social justice is the moral
08:51foundation of public health.
08:52The moral impulses that
08:54animate public health.
08:56Are to improve human well being by
08:58improving health and to focus on the needs
09:01of those who are most disadvantage to
09:03stay right there to focus on the needs.
09:06Of the most disadvantage,
09:10that's our moral commitment.
09:13Um,
09:13this is a matter of disclosure and
09:16and some other things will talk about,
09:18but I am on the IR be of the
09:22all of us program which is.
09:24The NIH initiative to enroll 1 million
09:27people in a database for ongoing research.
09:30I'm sure all of you know about
09:32all of essence.
09:33Maybe we have some all of us
09:36researchers there in the audience.
09:38So don't be mad at me at.
09:41You sent something in your protocols
09:43in in the IR be sent it back.
09:46It is our job to protect the human subjects.
09:50Also want to point out that
09:52there's a theme issue.
09:54The International Journal of
09:56Environmental Research and public
09:58health would be serving as the guest
10:01editor and we're really interested
10:03in commentaries, theoretical pieces,
10:05a thought pieces re framing,
10:07pieces of scholarship, and I would really,
10:10really encourage anyone out there who
10:13has work that they want to to share
10:17to consider submitting to Journal.
10:19And let me bring you greetings from
10:22our new president of all the photos.
10:24I could have showed you I picked this
10:27one as the school opened this is how
10:30they're portraying our new president and.
10:33I should say is the first African American
10:35President, University of Maryland.
10:37And this is an image that I think is quite.
10:43Illustrative of what he's facing
10:45at not much of a honeymoon.
10:47When you, when you become president
10:49at a time of a global pandemic.
10:52And so that doctor Darryl Pines,
10:55who was formerly the Dean of
10:58our school of Engineering,
11:00is now our new president.
11:03And I want to thank doctor
11:04markosian preparing for this.
11:06We talked about what would it be
11:08success in doing this kind of a session
11:10then here's what he said to me.
11:13That you know less entertainment
11:15and more enlightenment.
11:17To open up important discussions
11:19about complex, difficult,
11:20ethical questions of problems of racism
11:23in healthcare that is guidance he
11:25gave me and I'm taking that guidance.
11:28So I'm going to ask all of you to buckle
11:32your seatbelts because this is what I faced.
11:36In the you know.
11:38Mass media.
11:40In the upper left you'll see a flyer
11:42that talks about Kovid as a hoax
11:45that says do not take the test and
11:47do not take the vaccine that was
11:49sent to me by one of our one of our.
11:53Barbers in our barbershop Health Network.
11:56And I'll talk a little bit more
11:59about that later,
12:00but this was back in late February and March.
12:04This kind of information was being
12:06circulated in the black communities
12:08and and there were really no
12:10countermeasures this this has been
12:13seeding these neighborhoods for months,
12:15and now we're trying to get ready
12:17to go in with recruitment for
12:20COVID-19 vaccine trials.
12:22Now we're trying to ensure that
12:25people have their flu vaccine,
12:28and health professionals may not
12:30be aware of the extent to which
12:34that environment has been polluted
12:38with misinformation.
12:39And some of this misinformation and dis
12:43information coming from state actors
12:46specifically focused on causing confusion.
12:50But we're causing our own confusion.
12:52As you can see with that
12:54Roger stone piece up top,
12:56see Deanna interfering with
12:57important CDC reports and then
12:59HHS official has to apologize,
13:01calling scientists.
13:02Sedition I mean,
13:04have you ever seen anything like this
13:06in your careers and that doctor Anthony
13:09Fouchy would have to have security?
13:12I just pulled this one.
13:14He's had to have now security
13:17for his children and his family.
13:20I have never seen in our country.
13:23Our public health officials
13:26are scientists being a.
13:28Undermined And undermine from some of
13:31the hyest political offices in the land,
13:34and as a result,
13:35This is why we look this way.
13:38This is why the curve looks
13:40as we were in
13:41such a mess. Such disarray with this slide
13:44shows you is that guess what we actually do?
13:47Know how to flatten the
13:49curve and keep it down.
13:51But The reason that we have not as complex.
13:57And whether you agree or disagree with
14:00single payer healthcare as the countries,
14:02the United Kingdom and Canada and
14:04France and Australia and Italy?
14:06OK, you see where they are and you
14:09can see where we are unacceptable.
14:12There may be many, many reasons for that gap,
14:15but one of those reasons definitely has
14:18to do with who has access to healthcare
14:22without regardless of ability to pay.
14:24Covid has exposed.
14:26The deferred maintenance of our
14:29public health infrastructure.
14:32And it has exposed the any qualities
14:34and our health care delivery system.
14:37And so along the way,
14:39I want to make sure that we we,
14:42we, we balanced our our critiques.
14:44There's tons of literature on minority
14:46communities and why they don't trust
14:49and how they're hard to reach.
14:51We need to do more looking in
14:53the mirror at ourselves.
14:55What is it about our institutions?
14:57What is it about the way we're organized?
15:00What is it about the way we actually
15:02train our health professionals in
15:04our researchers that results in the.
15:07Very, very bad outcomes,
15:09but the data presents,
15:11and that's the backdrop.
15:13That's the context that we want black
15:17people to get in a vaccine trial.
15:20Now look here.
15:21This look at the headline,
15:23but look at the pull out the
15:26impact of medication can differ.
15:28Depending on a group's genetic makeup
15:30now I hope I have some geneticists
15:32out there in this audience,
15:35'cause we've been telling people that.
15:37We're all the same and at the level of,
15:41you know,
15:42even at that race is a social construction
15:46that is not biological and that we
15:48are the same and yet look at this.
15:52We differ by genetic makeup and
15:54that can determine what medication
15:56you get that's huge.
15:58It's a huge breakthrough in
16:01terms of precision medicine,
16:03but it's also huge mountain
16:06conceptual Mount and for laypeople
16:08to climb to overcome what they had
16:11been told that we are one people,
16:15one race, the human race.
16:18And even with that, yes,
16:20there is evidence of success.
16:23And while this one person marks
16:25Bradley 66 join the trial,
16:27it was so monumental he ends up ends up
16:30on the front page of the Washington Post.
16:33So while yes, there are some success,
16:36it's so rare that when it happens,
16:39you end up on the front page of
16:42the newspaper.
16:43He's also willing to talk about it.
16:45He's also highly educated.
16:47He's middle class out with a
16:49with an advanced degree,
16:51and so my point is.
16:53That's good, he sought out.
16:54How do I get into trial?
16:57The challenge we have are those who are
17:00not actively seeking to be in the trial.
17:03The challenge we have are those
17:06who may resist and be hesitant.
17:08That's our challenge and
17:09that is our opportunity,
17:11so it's in that context that
17:13I think that history matters.
17:15We've we've talked a lot about.
17:18In fact, we've been seeing this
17:20reckoning racial reckoning in
17:21the country with the Confederate
17:23statues and things being taken down.
17:26But I don't know how. How much?
17:29Awareness your audience
17:31has doctor more cozy about.
17:35The reckoning in medicine and public health.
17:39On the left I'm showing you a story
17:41because it was my former institution of
17:43the University of Pittsburgh where I
17:45was on the faculty from 2000, two 1010.
17:47That building there was called Parent Hall.
17:51A Thomas parent was a surgeon
17:53general of the United States,
17:54and he was a founding Dean of the
17:56Graduate School of Public Health,
17:58University, Pittsburgh.
17:59Maybe we have some pit alarm
18:01out there in your audience.
18:03Well, what's interesting here is that
18:05Thomas Perrin was surgeon general during
18:08the time of the Tuskegee syphilis study.
18:11An over the years.
18:13As graduate students and others became
18:16aware of this legacy and this history.
18:20A Long story short,
18:21you see the results.
18:22The Board of Trustees voted to remove the
18:25name of Thomas parent from the building.
18:28That didn't come from enlightened
18:31administrative leadership.
18:33That came from struggle that came from
18:36demonstration that came from a people,
18:38particularly students rising up
18:39saying they did not want a degree
18:42from a school that was named after
18:45someone who played a role in
18:47leading the Tuskegee syphilis study
18:49block there on the right.
18:51The father of gynecology
18:53who experimented on slaves.
18:54There was a statue to him.
18:58And it came down that statue came now.
19:02There is a reckoning in
19:04medicine and public health.
19:06What reckoning is occurring on your campus?
19:12And if you think all those things are in
19:16the past, those things are all behind us.
19:20Just look at the news and here we
19:22have a whistleblower complaint about
19:24unwanted hysterectomies among migrant
19:27women in ice detention centers.
19:30I can't believe or even talking this way.
19:34In the United States of America.
19:35So if you think these things are
19:37in the past, you're wrong.
19:39And I guess one of my questions
19:42when we get to the discussion is.
19:45What role do we have to play?
19:48What responsibility do we have?
19:50When our peers are peer medical
19:54professionals working an ice
19:56detention facilities are caught up.
19:59And participating.
20:00In this kind of behavior,
20:03what role do we have?
20:05To check ourselves. No.
20:09The Tuskegee suffer study comes
20:11up again and again because.
20:14In many ways.
20:15It's one of you can get your arms around it.
20:20This little town and make in Alabama.
20:23Macon County, Alabama.
20:25How is it that a story out of Macon County,
20:30Alabama?
20:30Tuskegee ends up being.
20:33A bellwether for bioethics.
20:36Let's remind ourselves that this
20:39was a study directed by the public
20:42health service from 1932 to 1972.
20:45And it is described as arguably the
20:47most infamous bio medical research
20:49that in the history of Medicine.
20:51But what I want you to notice
20:53here in this photo as the position
20:55white position there is drawing
20:57blood from one of the participants.
21:00That position is not in a clinic.
21:03That position is not in a hospital.
21:06He's in a planned.
21:08He's out on a plantation in the fields.
21:11He's got his lab equipment,
21:13his blood draw equipment in
21:15the back of his car.
21:18They went to where the people were.
21:20They met them in the fields.
21:23They. Built.
21:26Trust.
21:27Not this position necessarily,
21:30but the nurse who ran daily
21:32day and kept them in together.
21:35Her name was Eunice Rivers.
21:36Do you know how hard it is to keep a cohort?
21:41204 hundred plus men together for 40 years.
21:47We got a tip our hat to her will talk about
21:50the complexity of the role she played,
21:53but Eunice Rivers and the role she
21:56played in the outreach recruitment.
21:58The maintenance of crust,
22:00the relationship,
22:00the love she showed towards
22:03these men is instrumental.
22:04It cannot be thrown out.
22:07As part of the atrocity,
22:09let's talk about that.
22:10When the study broke in the
22:12newspapers in 1972,
22:14it was actually still going on.
22:16You have to understand no,
22:18that on the health professional side,
22:20few thought anything was wrong.
22:21This was not a secret.
22:23You see that sign of dirt secret
22:26Tuskegee study was never a secret.
22:28It were articles published in medical
22:30journals like 20 year retrospective of
22:32untreated syphilis in the male mean.
22:34These things were happening and
22:36being published during the time
22:38of of the civil rights movement.
22:40It is an amazing story and This
22:43is why it has so much traction.
22:45Why is this important here again?
22:49They use qualitative research.
22:51They reached out that used anthropologists
22:54to do interviews of world that
22:55people in the rural South to
22:58understand their their their beliefs,
23:00their cultural cues,
23:01and one of the things they learned in
23:04doing those qualitative interviews
23:06with that that for many black people
23:09in the rural South who were poor.
23:12There was a great fear over
23:14how they would be buried.
23:15And people wanted to be buried decently,
23:18and if you were poor in a rural farmer,
23:21it is highly likely that you
23:23would be buried in a seed sack.
23:26But if you join the Tuskegee Study,
23:29guess what?
23:29All the burial out cost of your
23:32burial would be taken care of by the
23:36government with burial insurance.
23:38They used the information
23:40about the cultural cues.
23:42Not necessarily to empower the people.
23:46But to get them to do with the
23:49scientists wanted them to do.
23:51We now need qualitative research
23:54and understanding the cultural and
23:56linguistic in the history of the minority
24:00communities that we want to be involved in.
24:03The COVID-19 vaccine trial.
24:06What are we going to do
24:08with that information?
24:09Will we use it to create more
24:12informed decision makers?
24:14Or will it be used again to
24:16get the people to do?
24:18What we scientists want them to do?
24:20Let's talk about that during the discussion.
24:24Today that legacy is part of
24:26what we call cultural memory.
24:28I don't know if you knew that the
24:31Tuskegee study now lives as a
24:34movie in this average boys that it
24:36lives in a jazz CD by Don Byron,
24:39called Tuskegee experiments or the
24:41one I really like that actually
24:43lives in a Marvel Comic Book
24:46Magazine called the truth.
24:47So now these things were out in
24:50the general public are out in the
24:53culture and we as researchers,
24:54investigators and health care professionals.
24:56Need to understand this is the cultural
24:59context in which were coming in.
25:02Engaging people in conversations
25:06about research.
25:08So one of the things that I want to
25:10make sure people don't lose whenever
25:12I read the newspaper reports to
25:14talk about the Tuskegee atrocity.
25:16They don't talk about any of the
25:18positives that came on the aftermath.
25:20And one of those positives was
25:22the Belmont report.
25:24And it came out with three principles.
25:26Respect for persons.
25:28But in essence,
25:30and justice and we spend a lot
25:32of time on respect for persons.
25:35Your autonomous agent.
25:36It's USD human subject or
25:38potential human subject to sign
25:40an informed consent beneficence.
25:41We agree as researchers not to
25:43harm you to do all that we can
25:46to make sure that you're,
25:48well,
25:48that's what we're going to do good by you.
25:51But we don't really talk as much
25:54about the principle of justice.
25:56Which I think is where we should
25:58be getting much greater attention.
26:01That means that those who bear
26:03the burden of research should
26:05not be denied the benefit,
26:06and I would submit to you that over
26:09the history from slavery to today.
26:12People are colored black.
26:14People,
26:14in particular have borne
26:16the burden of research.
26:18And we are not have not yet
26:21benefited from that research,
26:23and I would submit to you again that
26:26the national campaign to eliminate
26:28racial ethnic health disparities
26:30is part of that. Atonement.
26:33Part of that making things better.
26:37Part of that issue of justice,
26:39and so we should be aggressive.
26:42And reaching out,
26:43building bridges, building trust,
26:45building healthy communities an.
26:47I say that it is our institutions,
26:50Yale as an institution to maintain
26:53those relationships so that each
26:55researcher doesn't have to start from
26:57scratch to build those relationships.
27:00Let's have a talk about that
27:03as well during the discussion.
27:06So there's a lot of talk going on
27:08right now about single I Arby's.
27:10As I mentioned, I'm on the all of us.
27:13I RV. It's a single IR be.
27:16We have multi sites all over the United
27:18States and we are the Irbe of record.
27:21There is an effort to move towards
27:23single I Arby's from multi site clinical
27:26trials in a much more aggressive way.
27:28And when you start reading that material,
27:30you begin to realize that the
27:32motivation is really about accessing
27:34those biospecimens and not having to.
27:36Had barriers,
27:37and as you can see in making the
27:40case from bringing the common
27:42rule into the 21st century,
27:44when you read this,
27:45it's very clearly from the
27:47investigators vantage point and I
27:49was actually a bit surprised that in
27:52that justification they use the HeLa
27:54cell line as the example of why a
27:57common IR be would be so important.
28:00And we all know about HeLa cells.
28:03And now you know about Henrietta Lacks,
28:07because again, another movie.
28:09Another story that broke into
28:12the mainstream by an author.
28:14Rebecca Stewart.
28:16What a wonderful job she did to bring
28:20the story to our attention and.
28:24Um?
28:24Henrietta Lacks at the resident of.
28:28Baltimore,
28:28I share this with you because we
28:31passed legislation to actually
28:33create a Rd a highway in her honor
28:35and these are members of the of the
28:38Lacks family and I want you to see
28:40this amazing from what happened in
28:42Tuskegee and how its aftermath with
28:45handled to what's going on here.
28:47Now we name a Rd after him we have
28:49relax now in the National Portrait Gallery.
28:52She hangs in the National Portrait
28:55Gallery's like the mother of bio medicine.
28:57I mean,
28:58it's uh.
28:59Fascinating demonstration of what we can do.
29:05With enlightened leadership.
29:07Let's talk about that.
29:09But I actually think that the case
29:11typically we talk about single I Arby's,
29:14and the need to make sure that
29:16we respect local local issue,
29:18local culture, the better example
29:20or another example won't say better.
29:22This is another example,
29:24is the Havasupai case.
29:26And I'm I'm hoping sure that many of
29:30the audience know about this case,
29:33but here is a situation where again informed
29:36consent was collected was obtained.
29:39And you're sitting there with the
29:42stored samples and you got Young
29:44Scholars who need to graduate
29:45and get their degrees and gum.
29:47Some young scholar wanted to do his
29:50dissertation on genetics and schizophrenia.
29:52Long story short,
29:53you kind of get the point right.
29:56And and and the professor was
29:58so pleased to say,
30:00let's invite a member of the
30:03community to your defense,
30:04to your defense,
30:06to your dissertation defense.
30:07What a great idea.
30:09And so the person from the community
30:12as this thing began as the as the
30:15young scholar began to describe his,
30:18his research on schizophrenia,
30:20migration, inbreeding.
30:21She raised her hand and said,
30:23who gave permission for this?
30:28Yeah, you hear that silence.
30:29That's what happened in the room.
30:32And what happened next?
30:33Front page news all across the
30:36United States lawsuits, you see,
30:39it was settled there for 700,000.
30:41But more and more importantly,
30:43the native tribes.
30:45A shut down all research.
30:47This too, is a population suffering
30:50a disproportionate burden.
30:51Of Covid deaths and infection.
30:55How do we rebuild relationships and trust
30:59with the Native American community?
31:03So I think that relevant local
31:05information includes culture,
31:07linguistic characteristics
31:07of potential participants,
31:09geographic and social economic issues,
31:11knowledge about researchers,
31:12and information about study, site variation.
31:16You gotta do all that.
31:18Can this be done with one single IRB as
31:21the question is rhetorical question,
31:24let's talk about it.
31:27So.
31:27Since one of the key elements of ethical
31:32research is the informed consent process.
31:37I thought that's what I would use simply
31:40as the example for our discussion today.
31:43Ann One of the things that we've
31:46done in our qualitative research,
31:50we've interviewed African Americans.
31:52And we've interviewed researchers.
31:54And we took the results of those
31:57interviews and produced a scenario an
32:00I want you all once again to hold on.
32:03I'm going to stop sharing and
32:06I'm going to show you.
32:09I'm going to introduce you to Mr Gray.
32:11Here we go. Keep your fingers crossed.
32:16OK, now I go back into share.
32:20And.
32:36And hold on. Bear with me,
32:39ladies and gentlemen, bear with me.
32:42Here we go, Mr Green.
32:45Come on, get out of my way.
32:48There you go. Alright.
32:59just want someone to verify. Could you
33:06hear the sound? 65 year old?
33:13Yeah, OK here we go. Bold
33:15African American man with three
33:16grown children for 15 years.
33:18He worked on the loading dock at the
33:20local Walmart but was laid off after
33:23suffering a non work related back injury.
33:25Eventually he found work as a
33:27security guard at a bank but he
33:29currently has no health insurance.
33:31One year ago, Mr Green notice blood
33:33in his urine, but initially he
33:35was too embarrassed to mention
33:36the problem. Do anyone? After
33:38a few weeks, he began to feel
33:41pain on urination and
33:42went to the emergency
33:43room at the emergency room.
33:45Mr Green received a hurried
33:46examination and was given a
33:48prescription for antibiotics.
33:49After a week on the antibiotics, he returned
33:52to the ER since there had been no
33:55change in his symptoms at the emergency room,
33:57he received a prescription for
33:59a second type of antibiotic.
34:02Once again, Mr Green saw no improvement
34:04in his condition and returned to the ER.
34:07A third doctor suggested
34:08that he undergo a cystoscopy.
34:12It took Mr Green
34:13two months to save up the $750
34:16for the procedure which revealed
34:18cancerous cells and subsequent
34:19work has revealed bladder cancer.
34:23Today, Mr Green will meet with an
34:25oncologist who would like to enroll
34:26him in a clinical trial to study
34:29the effects of a new cancer drug
34:31used in combination with the current
34:33standard 2 drug treatment combination.
34:47Mr Green, unfortunately with the with
34:49the late diagnosis that you have,
34:51it has limited our options
34:53for how we can treat this,
34:56but what I can offer you is we do
34:59have a clinical trial that we've just
35:02begun the time researching at this
35:04point where we have a 3 drug therapy.
35:07I really believe this would be
35:10your best option at this point.
35:12Wait a minute, don't you have
35:14anything positive to tell me, I mean.
35:17Sorry, unfortunately at this point.
35:21We're not looking that this is
35:23something that could be curable,
35:25but what we can do is hopefully
35:27arrest development dot.
35:28I've been through hell.
35:30I know this thing started a year ago.
35:34I scared to death on me with
35:36blood coming out of my urine.
35:38I really embarrassed that I
35:39realized that unfortunately,
35:40with the delay that you that you
35:42had in seeking treatment delay,
35:44I went to the emergency room
35:453 separate occasions.
35:46The first time I stayed there 2
35:48hours and waited for Doctor Who
35:50spent less than 10 minutes with me.
35:52Took a urine sample and sent me on my way.
35:55It was like I wasn't even there.
35:57A week later I'm still bleeding.
35:59I go back to the emergency room.
36:01I waited another two hours of darkness day.
36:03As long as the first understand.
36:05I have read tell me this document Mr Green.
36:08I have read your chart.
36:09I'll go back a third time.
36:11Then it might have some cystoscopy
36:12or whatever. The thing is, just ask.
36:15Why can't I have the surgery?
36:18At this point the surgery would not be
36:21something that would be beneficial to you.
36:24This clinical trial that I am doing now,
36:27we're hoping to look at A3 drug
36:30therapy that will address the
36:32problem from another angle.
36:34Normally we do only A2 drug therapy.
36:37That's what standard now,
36:38but we're hoping that this third
36:41drug therapy will come at it
36:43from a different angle,
36:45and that although we can't cure the
36:47cancer at this point, we could.
36:50Prolong prolong your life.
36:52Arrested Development a bit?
36:55Prolong my life yes.
36:58What are you telling me?
36:59I can't have the surgery,
37:00So what are my chances without the surgery?
37:03On average, with the standard
37:06to drug therapy at this point,
37:09we're looking at nine months.
37:13But What I would like you to take a
37:16look at is this information I have on
37:20the clinical trial that we are starting now.
37:25The one thing that we do need to be aware
37:28of is whether or not you are diabetic.
37:30Do you have any history of diabetes
37:32in your family or do you know
37:34that you are diabetic yourself?
37:36OK,
37:36that would be our first step that we
37:38would have you tested for diabetes.
37:40If you are diabetic,
37:42that would eliminate you from the
37:44possibility of joining this trial.
37:46But that's where we would like to start.
37:48So what I would like to do is
37:50set up an appointment with my
37:52nurse out in the waiting area
37:54so that we can start this right away.
37:57Get you get you in the
37:59loop and get you started.
38:00Here, I gotta talk to my kids about this.
38:04I mean. Mr Green. Obviously you're
38:07aware that time is of the essence.
38:09I know and I know you don't
38:11have alot of time.
38:12I know you're a big man.
38:13I see all the people following you
38:15around your very important but.
38:19If we were there together,
38:20we would have you write down the
38:23first thing that comes to mind.
38:25I'm going to ask you to do that right now.
38:29Right down the first thing that comes
38:31to mind and drop it in the chat.
38:34Drop it in the chat.
38:36First thing that comes to mind.
38:38Drop it in the chat.
38:41Again, the whole point here is a
38:45discussion we could deconstruct
38:47that and point out so many things,
38:51and one of the things I want you to ask
38:57yourself is, do you know doctor Archer?
39:02Was doctor Archer your mentor?
39:04Is Doctor Archer sitting next
39:07to you right now?
39:09Let's talk about. How we train.
39:12And what the patients go through
39:14before they finally sit in front of us.
39:17And we give them an opportunity
39:19to participate in a research.
39:21If your health care delivery system
39:24is failing these communities.
39:26You, as an investigator,
39:28will also be tainted by that.
39:32Does it matter if you weren't?
39:33There doesn't matter if you didn't do it.
39:35And this is all the more reason why we
39:38need to make sure that these COVID-19
39:41vaccine trials don't mess things up.
39:43Because they will mess things up for
39:46everything that comes after it flu vaccine.
39:49Childhood vacinations all
39:50kinds of things we really need
39:52to do this with great care.
39:58Cultural tailoring matters. And.
40:00One of the things I want to do is talk
40:05about some of the solutions that we have.
40:08And one of our solutions is to have that
40:12conversation about bio medical research
40:14way before somebody ends up in the hospital
40:18trying to get a diagnosis for cancer,
40:20we want to have that conversation in
40:23settings that the Community Trust
40:25that the community owns and operates
40:28in our work for the past decade.
40:31Actually, past 15 years we've been
40:34building that infrastructure through
40:35black Barber shops and beauty salons.
40:38This image here where it says
40:40the doctors in it is not Fred the
40:44Barber playing second class doctor.
40:46It is Fred The Barber, who has trust.
40:50With his clients.
40:52That is telling them the doctors
40:55gonna be here tomorrow.
40:57The Gastroenterologist is gonna be here
40:59tomorrow to talk about colonoscopies.
41:02We make the barbershop a safe place for
41:06health professionals to come and do
41:09education and to do life saving screenings.
41:12And we call it health advocates interest in
41:15research that should be in reach an research.
41:18Sorry bout that typo health advocates
41:20in reach.
41:21Reaching within an research her.
41:23And we've established the National
41:25Association of black Barber shops and salons
41:27or health do to really gather together.
41:30Many of these programs around the country.
41:32You may have heard about some.
41:35You may have some right there in New
41:37Haven and to bring them under an
41:39umbrella to ensure that their receiving
41:42evidence based information too.
41:44To increase the likelihood that they
41:46are reaching their clients with
41:48valuable information that their
41:49venues can be opportunities to train
41:52or health professionals.
41:53What you see here is a young pharmacist
41:56interacting with this young man and
41:58that's her Dean's standing behind her.
42:00These are my two partners.
42:02We have 10 shops here in the Metro DC area.
42:06Mr Fred surprise of President of
42:08our National Association of black
42:10Barber shops and salons for Health,
42:12and Mr Brown is the vice president.
42:15And we're really giving these men
42:17agency to talk about research,
42:20to talk about health promotion,
42:22disease prevention, and the Macon.
42:24OK,
42:24to have those conversations in
42:27the barbershop.
42:28And we believe that this is an
42:31underutilized resource we all know about
42:34the church and faith based programs.
42:36This is simply another asset,
42:38especially during covid,
42:40that we need to bring to the table
42:43and what you see us doing here is
42:46looking at what's the likelihood was
42:49the feasibility and acceptability
42:51of bringing a COVID-19 saliva test.
42:54Into the barbershop, how might that work?
42:57And as you can see here,
42:59the barbers are really excited
43:02to have spit in a tube,
43:04got their laboratory pack ready,
43:06sent it off to the lab of once
43:09the pack arrived at the lab.
43:12They had results on their cell
43:15phone in 24 hours, 24 hours.
43:17In December we brought the barbers together
43:20with scientists under a workshop title,
43:23what black barbers and stylists,
43:25data scientist,
43:26no research on us.
43:28Without us, the community wants to
43:29be part of research they believe
43:32research is important, but they want
43:34to be part of the whole process.
43:37Don't show up when everything's all decided.
43:39Tell me to roll my sleeve up we
43:42want to be part of the process
43:44from the beginning to the end,
43:47and we also want to make sure that you come
43:50back to our community and share the results.
43:53The infrastructure that we've created
43:55allows for makes it makes it easier for
43:58researchers to be able to come back
44:00and deliver results to the community,
44:02so her builds upon this rich and powerful
44:04history in barbers and beauticians
44:06after telling my white colleagues.
44:08No self respecting Black Barber.
44:11Whatever say I'll get you in and
44:14out 15 minutes.
44:15It is an experience of family experience.
44:18People are there for hours and these
44:21barbers have relationships with
44:23their clients that doctors would.
44:25Would wish for.
44:27And so we are training the barbers.
44:32We put him through formal training.
44:35We had our first Barber become a
44:38certified community health worker
44:40that makes them eligible for
44:43reimbursement through insurance.
44:45There's just many innovative ways to
44:48think about how we build back better.
44:53In many ways, these barbers are like artists.
44:55Organizing them is not easy and
44:57it's taken time,
44:58but we have spent the time that we
45:01think we understand the factors
45:03that would allow us to spread this
45:06model across the country.
45:08And so it now about looking in
45:10the mirror ourselves.
45:11But before I do that, I gotta take you back.
45:14Because if I don't take you
45:16into the barbershop,
45:17Karen is going to be on my case.
45:20So let me let it cross your
45:22fingers one more time,
45:23cross your fingers,
45:24run more time I've gotta take you into the
45:27barbershop so that you can meet the barbers.
45:29An I think that you're going to be very,
45:32very,
45:32if you've never been in a black Barber shop.
45:35You might find this quite interesting,
45:37so I think I'm sharing my screen here.
45:40Here we go.
45:42Um?
45:42Keep your fingers crossed oh,
45:46keep your fingers crossed and I'm
45:49gonna take you into the Barber shop,
45:52here in Hyattsville, MD.
45:54Here we go.
45:58Early in the pandemic,
46:00you heard the refrain.
46:03We're all in this together.
46:07And I love that. But overtime,
46:09as we've begun to see how the virus has
46:13exposed inequalities in our society.
46:15We realized that we may be all in the
46:19same storm, but we're in different boats.
46:22And if you're not testing in vulnerable
46:26communities, minority communities,
46:28you're flying color blind.
46:31That's what we're trying to fix well.
46:35In many African American communities,
46:38trust between the black community,
46:41an medical health systems hospitals,
46:44researchers. It has been broken.
46:46It has been crushed.
46:48It has been tarnished.
46:50And therefore it must be rebuilt.
46:53There were Flyers being distributed
46:55saying Covid is a hoax.
46:57Don't take the test.
46:59Don't take the vaccine being spread
47:03in the black community.
47:05Everybody is afraid of.
47:07Some people don't know why they're afraid.
47:12Some people just afraid because
47:14other people are afraid.
47:15We got work to do.
47:20And I'm convinced that you
47:23need to engage people in the
47:26community who already have trust.
47:29Black barbers and stylists have tremendous
47:32credibility and tremendous trust.
47:35We become like pillar citizens
47:38in the community.
47:39We become fashion consultants,
47:42marriage counselors, health advocates.
47:44And the credibility they have the trust
47:48they have is something that we now need.
47:51In an effort to eliminate.
47:54Racial and ethnic health disparities.
47:57And at the time of a global pandemic,
48:00what better place?
48:01To role model how to protect yourself?
48:04That's why the saliva test is so important.
48:07It's a breakthrough.
48:09We've launched the campaign to mobilize black
48:12Barber shops and beauty salons as Cobett.
48:1419 mitigation sites where you can learn
48:17how to protect yourself and your family,
48:20where you can get a COVID-19 saliva
48:22test where you can get a flu shot and
48:26where you can get a really good haircut.
48:29And if we can bring a test.
48:32Into a humble black barbershop.
48:35And if it is acceptable,
48:37and if it is feasible. Why not?
48:41Why can't we do it all over the country?
48:45Last night we have something for you.
48:50Now for the past two decades.
48:54Efforts of mobilizing black
48:57Barber shops around colon cancer.
49:01Prostate cancer hypertension
49:03have been growing.
49:05My bottle was mine is my counselor.
49:07We've covered numerous alot
49:09of things over the years.
49:12It says we've been dealing
49:13with the matter school.
49:14Probably help.
49:15And I think it's definitely better
49:18beneficial to our community fired.
49:21Silver doctors I really appreciate
49:25you being available man.
49:27You don't have to have space suit on
49:31another in order to administer it.
49:34It's self administered.
49:36And you literally go through a step by
49:40step guide about how to do the procedure.
49:44And you literally spit into a tube.
49:48For like a walking through the desert.
49:52Testing matters I mean.
49:54The brothers in the shop not
49:58only were willing and able.
50:01Some of the people watching say,
50:03Hey,
50:03who are these folks?
50:05What are they doing when they found out
50:07that Mike was doing akova test saliva test,
50:11they said can I have one?
50:13Can I do one? That's how trust works.
50:16Drop that in the UPS envelope.
50:18The rest all comes on the phone.
50:21It's an amazing process and I can tell you
50:24right now he's telling his family about it.
50:27He's telling his friends,
50:29and in these communities that's how it works.
50:32It's really the word of mouth.
50:34It's not just the message
50:36is also the Messenger.
50:38I think the world is going
50:40to change behind this.
50:42I think if we do this right
50:44we will rebuild better,
50:46but the Barber shop of the future.
50:49In the post pandemic period will
50:51actually be a place where you
50:53can receive quality healthcare.
50:55Imagine that I just got my seat belt on.
50:59I got my seat belt on,
51:01that's it and go for the ride.
51:36thank those barbers. They were awesome.
51:45Now I'm gonna head to the finish
51:48line here and hang in there.
51:50I'm doing this share again.
51:53OK, where was I?
51:56OK, here we go. And so, again,
52:02are the themes that we've addressed.
52:05Have been varied.
52:06We have collected Michael bio DNA.
52:09We've done air quality measures and
52:12collected urine to look for endocrine
52:16disrupting chemicals in the expire urine.
52:19Once we had the trust.
52:22It's amazing even our basic scientist
52:24or able to work with us in the
52:27Barber shops and beauty salons.
52:29And so we believe this is a way forward
52:31of thinking differently of rebuilding
52:33back better and really putting an
52:36infrastructure in place that allows
52:38us to address the underlying health
52:40disparities that are plaguing this community.
52:42And so this notion of we call
52:45it urban immersion, FFF.
52:46We were not in the pandemic.
52:49I would convince your leaders there that we
52:51should bring a delegation here to Maryland.
52:54We would spend time in the Barber shops.
52:57We would immerse you in the community.
53:00But one of the things that
53:02the pandemic has done.
53:04It has made us again,
53:05think very creatively,
53:07and so another part of our training
53:10has to do with how to become
53:12a self reflective researcher.
53:13And this is the use of
53:16artificial intelligence.
53:17And virtual reality,
53:18and so in the previous video you
53:22had a chance to meet Mr Green.
53:24That was our creation of a video
53:27with an actor to reenact what we had
53:31found in our qualitative research.
53:33This is a Fast forward to what
53:35I think may well be.
53:37The game changer in the future
53:39for training health professionals
53:40and researchers in particular.
53:41And it's called the.
53:43This is our 3D virtual reality human subject.
53:46This is Darius sitting in the chair there,
53:49but up in the upper right hand
53:51corner is Doctor Wilbur chin.
53:54Our position scientists,
53:55who is one of the investigators on the
53:59COVID-19 vaccine trial and Doctor Chan,
54:02is challenged with the recruiting Latin X,
54:05an African American participants to
54:07the trial, and so this scenario.
54:10We actually programmed Darius to
54:13respond in the ways that we know from
54:16the literature that African Americans
54:18and other minorities feel with those
54:21factors are in there literally.
54:23In active and Doctor Chen
54:25literally has a conversation.
54:27If we had more time I would
54:29show you the scenario.
54:31Maybe will follow up and
54:33you'll be able to see it.
54:35One of the things that in the debrief
54:37with doctor chin he described that he
54:40could feel his heart rate increase.
54:42He actually had any emotional
54:44response interacting with Darius,
54:45and that's exactly what you want to
54:48have when they've done research in
54:50real time with real people in what
54:52they call the standardized patient model.
54:55I'm cortisol levels in real time with
54:58real people with the same cortisol
55:00results they saw in the simulation.
55:03So let's talk about this.
55:05How computer simulation can
55:07help accelerate improving,
55:08giving our researchers new tools
55:10so you can practice right
55:13here in the simulator before
55:15you go out into the community.
55:18Are we also have an online interactive
55:20website called building trust?
55:21This is one of the products
55:23scientific products of our NIH grant,
55:25and it's available we can talk about
55:27this as well with tremendous resources,
55:30and this is the training
55:31program that we have.
55:33I told the organizers I was not interested
55:36in coming in doing a one and done.
55:39I'm interested in convincing your
55:41leaders that we need to actually
55:43implement this kind of training of for
55:46researchers to become self reflective,
55:49not only in the context of Kovid,
55:52but in the context of the underlying health
55:56disparities that we're all witnessing.
55:59And so I'm gonna head to
56:01the finish line here,
56:02'cause it's that conversation.
56:03I think that is so important.
56:05But this process and you all know it.
56:07The informed consent.
56:08You blame us sometimes in the IR be,
56:11but it is one of the aftermath.
56:13Positive legacies from pesky that
56:15we have better informed consent.
56:16But here's one of the things that
56:18we've learned in our own research when
56:21we ask questions to researchers and
56:23we ask questions to the community.
56:25Let me just take a moment here for Karen Or.
56:29Doctor material how are we doing on time?
56:39We're doing good.
56:40We will have a hard stop at 6:30, OK?
56:44So these are the questions.
56:45What methods do you use?
56:47And you you should work with me here.
56:50I'm asking you what method do you use
56:52during the informed consent process?
56:54What strategies do you use
56:56to increase understanding?
56:57How do you assess participant understanding?
56:59That was a question to the researchers.
57:01Here is a question to the community.
57:04How do you like to learn about research?
57:07What methods are helpful for understanding
57:09the informed consent process?
57:10General knowledge of research terms
57:12and the purpose of informed consent.
57:16And I'll take a look at what we found
57:19again in terms of the comparison,
57:21knowledge of research terms,
57:23the percent of African Americans
57:24who got it correctly, Sir,
57:26African American Latinos.
57:27And you can see no ones getting 100%.
57:31And I don't know if you think
57:33that when it comes to placebo at
57:3659.4% got it correct and 54% of
57:39the next people got it correct.
57:41I don't know if you think that's acceptable,
57:44but I can say right now in reading
57:46some of the stories of the of the
57:50COVID-19 clinical trial participants,
57:51there was over African American
57:54woman who was like surprised.
57:56That she was possibly in the placebo arm.
57:59She had no idea that somehow
58:01she would not get active.
58:03Active vaccine isn't that interesting.
58:07There's a reason why we have
58:09placebo controlled trials,
58:10and if the community doesn't
58:12understand that you don't want
58:14them thinking they've been duped.
58:16Randomization just a little more
58:18than half nobody, randomization is.
58:19And far fewer know what a double
58:22blind study and that's the case
58:24with the Kovid Vaccine.
58:26These are double blind.
58:28Double blind randomized trials.
58:31So we can compare the researchers methods
58:33to methods to preferences of the community.
58:36Take a look at here the researchers
58:39in blue and the community members
58:41are in red terms of the bars,
58:44so when it comes to take information home,
58:47more researchers.
58:48Do that one on one discussion.
58:51The key is to see where you
58:53see the big difference.
58:55Look at talk to participant.
58:58The community wants more talk.
59:00They want more time to talk about it.
59:03The community wants group discussion.
59:05The community wants video.
59:09The community wants interactive games even.
59:13So we want to look at where we see this
59:16mismatch and trying to get better alignment.
59:19What about the format for
59:20informed consent document?
59:21The researchers are the black bars and
59:24the community members are in the red bar.
59:26Here again, look at plain language.
59:28We all get that health literacy.
59:30The researchers are all very,
59:32very keen on that.
59:33But how about taking time
59:34to summarize the results?
59:36To summarize what we just talked about,
59:38how about using pictures about large print?
59:41They both agree that question
59:43and answer is important,
59:44but look where the differences are.
59:47So these differences between researchers
59:49and community members strategies used
59:52by researchers to teach potential
59:54participants about the study or not
59:56viewed as helpful by community members.
59:58Methods considered by the community
60:00members to be very helpful that are
01:00:03that are less frequently used by the
01:00:05researchers and formats for the informed
01:00:07consent document preferred by the community.
01:00:10Members are not often
01:00:11used by the researchers.
01:00:13We can do better.
01:00:15What does the literature say about?
01:00:18Most effective.
01:00:20It's face to face interactions,
01:00:23extended conversations teach
01:00:24back in plain language.
01:00:27Less effective pictures,
01:00:28large print and video.
01:00:29Isn't it interesting?
01:00:31The very things of community
01:00:33said they want more of the
01:00:35literature says is less effective.
01:00:37So we compare comparison of the community
01:00:40member response and an effective strategies.
01:00:42Again,
01:00:43let's go to the literature.
01:00:45Community members take information home.
01:00:50One on one discussion.
01:00:51This committee says this is what we want.
01:00:54Multiple meetings.
01:00:55Talk to study, but I want to talk
01:00:58to somebody else is in that study.
01:01:00Plain language, we have a lot of Acronyms,
01:01:04a lot of a lot of. Say Mumbo Jumbo,
01:01:07but we just speak in our own language,
01:01:09and it's a problematic when someone ask
01:01:11you what's a vaccine and all the sudden we
01:01:13started giving them a microbiology class.
01:01:16They want summaries.
01:01:18They want pictures.
01:01:20Here's the literature.
01:01:21One on one discussion,
01:01:22multiple meetings, group discussion,
01:01:24talk with participants,
01:01:25plain language,
01:01:26and as you can see here in the bold
01:01:30is where the two kind of align.
01:01:33Here researchers assessment of
01:01:36participants understanding.
01:01:37So what do researchers assess?
01:01:42At the participants actually understand.
01:01:45Using open ended questions.
01:01:4752% of them use open ended questions sign.
01:01:51The initial an initial every
01:01:53page of the consent document.
01:01:5551% use that. These consent documents,
01:01:59some of them are at least for the vaccine
01:02:03trials Covid Vaccine stronger 2020 pages.
01:02:06Sign every page. Teach backs.
01:02:08Only 38% use out independent
01:02:10monitor far fuel.
01:02:1211% participants completed questionnaire.
01:02:13Oh and 10% something other.
01:02:16But look at this 32% did nothing.
01:02:22What we know about informed
01:02:25consent participants have complete.
01:02:27Participants may have complete
01:02:29comprehension of information delivered
01:02:30during the informed consent process.
01:02:33Discrepancies between researchers,
01:02:34practices, and community members preferences
01:02:37in both learning about and study.
01:02:39Learning about a study and the informed
01:02:42consent document and researchers
01:02:43assessment of participant comprehension
01:02:45limited and sometimes inadequate.
01:02:47There are issues with the use of plain
01:02:50language in the informed consent document.
01:02:53Let's be honest with one another.
01:02:57The informed consent document are
01:03:00increasingly filling like legal
01:03:02documents to protect our institutions.
01:03:04And that that's the case,
01:03:05let's just be honest about that.
01:03:08Here's some recommendations to
01:03:10an improved the informed consent
01:03:12process increased comprehension.
01:03:14Increase satisfaction.
01:03:15To deal with comprehension one
01:03:18on one discussions,
01:03:19multiple meetings in plain language
01:03:22and then assess their understanding.
01:03:24The increase satisfaction one on
01:03:26one discussion, multiple meetings,
01:03:28pictures and summaries.
01:03:30And maybe we should follow what
01:03:33doctor Collins had to say in 2011.
01:03:35Perhaps we need to rethink all
01:03:38those 22 page consent forms.
01:03:40And he says that nobody reads anyway.
01:03:42I thought that was quite interesting.
01:03:46And so and so. With that,
01:03:49I'm going to take the chance
01:03:51and come out of share screen.
01:03:54Find out what has been put in that chat box.
01:03:59Open up this conversation.
01:04:01And see if your colleagues there at Yale, Dr.
01:04:04Mercurio, if he still gonna speak to me.
01:04:07Hello, my friend.
01:04:08Hello my friend,
01:04:09you know, I apologize,
01:04:10I couldn't get on.
01:04:11That has been in the corner
01:04:13silence and I couldn't break out.
01:04:15When you ask me about time. So that's why.
01:04:18Thanks Karen for responding.
01:04:19But I did break out of the cone of silence
01:04:22and I'm here now and we've got some
01:04:24questions for you on the talk was wonderful.
01:04:27I thank you so much.
01:04:28There's a lot there. We learned a lot.
01:04:31It is one of the frustrating aspects.
01:04:33Of these these times,
01:04:34the kovid times that we can't take a
01:04:35Field Trip and see what you're doing
01:04:37in the barbershop, see what's going on.
01:04:38You know I was just in a meeting before this,
01:04:41where someone was talking about how you
01:04:42know another place they do such and such,
01:04:44and I was thinking, you know,
01:04:45any other year I would say, Well,
01:04:47let's just get in the car or get on a
01:04:49plane and go see what they're doing.
01:04:51But it's not so easy now,
01:04:52so that's frustrating.
01:04:53So for you to bring this here to us in
01:04:55a way that really brings it to life
01:04:56is very helpful and much appreciated.
01:04:58So I have one question.
01:04:59Is a little bit long.
01:05:00It's from one of our public
01:05:02health professors and I want to.
01:05:03I want to share this with you.
01:05:05It's about the disparities related
01:05:06to COVID-19,
01:05:07so it's not directly related to the
01:05:09to the research issues are raised,
01:05:11but let me read this and get your
01:05:13take on this and then for the
01:05:15others were listening on the call,
01:05:17Please send in questions you might
01:05:19have via chat and I'll pick some
01:05:21up and read him to Professor Thomas
01:05:23after he is a chance to chew on
01:05:25this for a little bit.
01:05:26So the question that was sent to us
01:05:28was this the disparities in population level?
01:05:30Severe outcomes of COVID-19 such
01:05:32as hospitalizations and deaths.
01:05:33Scene between people of color.
01:05:35An non Hispanic whites are,
01:05:37in my opinion largely attributable
01:05:39to differences in exposure both
01:05:41at work and within the home.
01:05:42Much of an involuntary and to
01:05:44a lesser extent,
01:05:45the former having a higher prevalence
01:05:47of risk factors for severe outcomes,
01:05:50for example obesity and diabetes.
01:05:51So it's more about exposure and less
01:05:54about the risk factors, it says suggested.
01:05:56Here.
01:05:57However,
01:05:57some might claim that they also
01:05:59could have a higher prevalence of
01:06:01personal risk taking behaviors such
01:06:03as less mascus Less social distancing,
01:06:05more attendance at large gatherings
01:06:07such as religion related.
01:06:09Are there good studies examining
01:06:11the prevalence of preventable risk
01:06:14taking behavior by a racial or
01:06:16ethnic groups in United States,
01:06:18such as attitude or behavior studies,
01:06:21so is there?
01:06:22Are there good studies examining
01:06:24the prevalence of preventable
01:06:26risk taking behavior?
01:06:28By different racial and
01:06:29ethnic groups in the US.
01:06:30Are you aware of that?
01:06:33Well, at. I think that some of it is early.
01:06:39I think those are the studies that we need.
01:06:41We've seen billions of dollars literally
01:06:43thrown into the vaccine development,
01:06:45you know, but we're giving them
01:06:47billions of dollars even before
01:06:49they've developed a vaccine.
01:06:50But to get an investment
01:06:52in social science research,
01:06:53to answer the very question
01:06:55that's being asked here. Listen,
01:06:57we're living now in a natural experiment,
01:06:59we're putting the American people
01:07:01through a natural experiment.
01:07:02We need those kind of studies,
01:07:04but if anyone who's been watching has
01:07:07seen these RF peas come out of our.
01:07:10The agency we love, the NIH.
01:07:12They're competitive,
01:07:13non competitive renewal's their
01:07:15supplements there you already have
01:07:18to have have a grant to get a grant
01:07:21me it's just crazy and then some of
01:07:23the bigger awards were they have one
01:07:26award in the entire country. So so.
01:07:29I'm not saying that their studies that
01:07:31were being called for having been done.
01:07:34I haven't seen them.
01:07:35I live in this space. I look for them.
01:07:38I'm doing, let searches for them.
01:07:40I haven't seen it yet.
01:07:42But everything that was asked.
01:07:46Is answerable.
01:07:49But the kind of robust research to answer it,
01:07:52I don't see being done.
01:07:53Now we know we don't need a study
01:07:55to know that exposure matters.
01:07:57An interview can't stay home and
01:07:59work from home like most of us.
01:08:02And you have to be out there.
01:08:04Yes,
01:08:04you're going to be more exposed.
01:08:07And I can just watch what's
01:08:09happening at the grocery store.
01:08:12The workers overtime just relax and all
01:08:15of a sudden you got mask as a beard,
01:08:18masks hanging off one ear.
01:08:20Half mask the nose out.
01:08:22And because they're getting comfortable
01:08:24with their friends and their
01:08:26watching what's happening in Florida?
01:08:28We are in trouble.
01:08:29We have no national plan and
01:08:31we have active efforts that are
01:08:34discouraging people from actually
01:08:35practicing the mitigation behaviors.
01:08:38So, so I think that's part of the problem.
01:08:42The answer we got data streams coming
01:08:45with phone mobility mask usage.
01:08:47There are some companies collecting
01:08:49this data.
01:08:50I've not seen it harvested yet in a
01:08:53way that says. Here's an action step.
01:08:56But I'm going to also say that
01:08:58we don't need another randomized
01:09:00trial to help people practice
01:09:03the mitigation behaviors.
01:09:05Here's my question.
01:09:06If we're now to a point where I can tell
01:09:10you where the covid infections are,
01:09:12were the zip code where they're dying.
01:09:16Am I also making sure that there's kovit
01:09:18test sites in those same zip codes?
01:09:21That would be the logical thing, right?
01:09:23That's not the case.
01:09:25You'll find a mismatch.
01:09:26You would think that if I'm showing
01:09:28you a zip code where we have increased
01:09:32community spread an infection,
01:09:33I would think that we would be re
01:09:36doubling our efforts right now to
01:09:38make sure that there's flu vaccine clinics,
01:09:41mobile clinics in those neighborhoods.
01:09:43Do you think that's happening right now?
01:09:48Who would put money on the table that were
01:09:51pre pre positioning flu vaccine clinics in
01:09:54the very zip codes where we know Cove it is.
01:09:57It is not systematic as a patchwork.
01:10:00We are in trouble and it's an institution
01:10:03like yours that can make a difference.
01:10:05If our clinical researchers of our
01:10:08comprehensive Cancer Center director's
01:10:10came together with some improvement
01:10:12or to say this is unacceptable,
01:10:14we gotta do better.
01:10:16We have to do different.
01:10:18We have to let the resources follow the data.
01:10:23That's what we need.
01:10:24We're going to speak up.
01:10:26People were not used to being
01:10:28in that political space.
01:10:29We must be were being dragged into it and
01:10:32now the time to do that as an ethical.
01:10:36Obligation.
01:10:37Well,
01:10:38that that brings it back.
01:10:39Certainly the purpose of this night
01:10:41and this group is that that that the.
01:10:45There is the the ethical obligation to
01:10:47apply the science to apply the Public
01:10:50Health Science in a manner that's
01:10:52effective and more equitable is paramount.
01:10:54I mean, it's something that that we
01:10:56certainly have not yet not yet achieved,
01:10:59not yet done as well as we need to.
01:11:02I want to pass a couple more
01:11:04questions on too.
01:11:05So first someone asked a very
01:11:07straightforward question,
01:11:08which is I have the beauty salons
01:11:11worked as well with women.
01:11:13You know the women have been so
01:11:16far ahead of us than the women
01:11:18have been doing breast cancer
01:11:19screening through beauty salons.
01:11:21There's a whole range of issues where
01:11:24the women have done a really great job.
01:11:27We have a book chapter that's
01:11:29coming out a second edition of a
01:11:32book chapter that describes the
01:11:34whole beauty salon and Barber
01:11:36shop initiative in great detail.
01:11:38And the current chapter.
01:11:39I'll make sure doctor Mercurio
01:11:41mixture that you had that share.
01:11:43Thanks. Will be sure to will
01:11:45be sure to post it then on our
01:11:48website. But what happens is
01:11:49we go through these waves.
01:11:50We go threw away Vevo breast cancer
01:11:53outreach and their litter is long
01:11:54and then the money drives up the
01:11:56grants cool white and we leave.
01:11:58And then we go it again and
01:12:01we can't keep doing that.
01:12:03My point again, on an ethical obligation.
01:12:06It is our institutions that have a
01:12:08responsibility to maintain trusting
01:12:10relationships in these communities so
01:12:12that our investigators don't have to
01:12:15start all over again every single time.
01:12:17The beauty salons have been an outstanding
01:12:20place and that's where we did our
01:12:22work on the environmental hazards
01:12:24of exposure to endocrine disrupting
01:12:26chemicals in hair care products.
01:12:28We did that in the beauty salon
01:12:30and we found that those salons
01:12:33serving African American women,
01:12:35but this stylist.
01:12:36Had endocrine disrupting chemicals
01:12:38in their expired urine 7 times
01:12:40greater than the general population,
01:12:42so it has implications for air handling
01:12:44implications for a whole range of things.
01:12:47And guess what that was pre
01:12:49kovid now in the kovit space.
01:12:51We also have implications for
01:12:53what air handling you know.
01:12:55Should we have UV lights in the
01:12:57Barber shops and beauty thoughts?
01:12:59It is a practice or profession
01:13:02that you cannot do 6 feet away.
01:13:06Next
01:13:06question. This is actually very
01:13:08interesting so that they ask
01:13:09what process weather rolling in.
01:13:11So I gotta move this for scrolls down.
01:13:13What process interesting what the
01:13:14process that led to the determination
01:13:16that Barber shops would be a pipeline
01:13:18to the African American community.
01:13:19Since they have so much trust in it
01:13:21'cause it's so if this were to be
01:13:24replicated in other communities such
01:13:25as the Native American or the Latin X,
01:13:27how would researchers and
01:13:28physicians find the appropriate fit?
01:13:30So how did you know it was the Barber shops?
01:13:32And so if we can use that in
01:13:34the other communities as well?
01:13:36So again established that Bridget
01:13:37trust that you've.
01:13:38Pointed out is is the important
01:13:40missing ingredient here.
01:13:41I'm
01:13:42sure there are people in the
01:13:44audience have driven by urban
01:13:46neighborhoods and seen a Barber shop,
01:13:48so there was a Barber shop.
01:13:50So let me just say this,
01:13:52don't go out and do this without training.
01:13:55It looks simple, it's complicated,
01:13:57is complex. It takes time,
01:13:59but for me as a member of that community,
01:14:02I was sitting in the Barber shop
01:14:04and somebody came in that people
01:14:06hadn't seen for awhile and.
01:14:08And Mark, but I have to tell you.
01:14:11How can I explain this to you?
01:14:14It is not like Supercuts or hair Cutler,
01:14:16you might might.
01:14:16My white friends say I I had my
01:14:19appointment at 2:00 o'clock.
01:14:20I show up at 2:00 o'clock.
01:14:21I'm out in 15 ten 1015 minutes.
01:14:23I don't even talk in the last
01:14:26thing I've ever say is to ask
01:14:28my stylus anything about health.
01:14:30So what I'm trying to explain to
01:14:32them is that the Black Partnership is
01:14:35like is like a community gathering.
01:14:38There are multiple TV's in these shops.
01:14:40Guess what?
01:14:41They're all on to different
01:14:43stations and the music playing.
01:14:45You follow me so far,
01:14:47so you're walking into a cacophony of sound.
01:14:50Everybody's talking and I remember a
01:14:52guy came in, uh, to protect them all.
01:14:55Just calling Joe people,
01:14:56said Joe,
01:14:57where you been and Joe says he
01:15:00was in the hospital.
01:15:02That they took him to the emergency
01:15:04room and they kept him for five days.
01:15:07They said he had had a heart attack,
01:15:09and so while Joe's talking in the music's
01:15:12on in the TV's on that people are listening,
01:15:15then Joe gets in the chair.
01:15:18And then there's an intimacy in that chair.
01:15:21I think that what I've come to realize
01:15:23that that that sound is a shielder intimacy,
01:15:26assure protection of privacy,
01:15:28'cause you're out in the open,
01:15:30but you're, you're literally.
01:15:32In the person's ear, as the Barber,
01:15:35and so there talking.
01:15:36And Joe pulls out.
01:15:38Bile appeals, and he said.
01:15:40My doctor told me I have to take
01:15:43these the rest of my life.
01:15:45Now everybody in the barbershop listed now.
01:15:48And the Barber says Joe,
01:15:50if you take those pills,
01:15:52you won't be able to keep up
01:15:55your obligations.
01:15:56Now Karen, the camera don't explain
01:15:59what obligations mean. No you don't.
01:16:03Mark I realized at that moment.
01:16:09If you erect how this function is
01:16:11one of the side effects of some of
01:16:14these hypertension drugs, drugs.
01:16:15But I realized when that Barber said Joe,
01:16:18if you take those pills,
01:16:19you won't be able to keep up your obligation.
01:16:21Joe is not taking those pills.
01:16:22I saw that on his face.
01:16:25And his Doctor has no idea that
01:16:27there somebody in the community,
01:16:29but that kind of influence.
01:16:32I said,
01:16:33what if that Barbara was was working with us?
01:16:37What is that Barber said, Hey Joe,
01:16:40if you're experiencing side effects,
01:16:41tell your doctor they can adjust the
01:16:44medication, knows they can do things,
01:16:46don't hide it.
01:16:47And that's where the idea about her.
01:16:50I came to life.
01:16:51And what we realized is that
01:16:53these barbers feel like they
01:16:55are stewards of their community.
01:16:57They feel like they are shepherds.
01:17:00I went children come in to get
01:17:02their first haircut is some big deal.
01:17:04People are there with cameras.
01:17:06And I'm watching this father places
01:17:08child in the chair for his first haircut,
01:17:10and I'm listening to them talk and I'm
01:17:13picking up on the fact that that Barber
01:17:15Cut the father's hair at the same age.
01:17:19That's the relationship they have.
01:17:21They have that Marcus Welby.
01:17:24Neighborhood relationship that
01:17:25doctors want and have lossed,
01:17:27and that's what her is all
01:17:29about and what we have learned.
01:17:31Mark is that when we bring the medical
01:17:34professionals into the barbershop,
01:17:36they love it.
01:17:37They say This is why I became a doctor.
01:17:40This is why I became a nurse.
01:17:43It reinvigorates their passion for
01:17:45why they came into the profession,
01:17:47what we have to do is create
01:17:49that space to make it easy for
01:17:52them to come into those venues.
01:17:55And that's how her was launched.
01:17:57And there are fledging little
01:17:59projects around the country.
01:18:00New England Journal did a major randomized
01:18:03clinical trial proving that it works,
01:18:05but you know how it works.
01:18:07Mark.
01:18:07We do the trial, we prove it works.
01:18:10We write the paper.
01:18:12The grants done, we leave.
01:18:15What works,
01:18:16what can save lives is living
01:18:19in our journals.
01:18:20So at the University of Maryland,
01:18:23Center for HealthEquity are
01:18:24focuses on what we call 4th
01:18:27generation disparities research.
01:18:29It is translating the science of Medicine
01:18:31and public health into culturally tailored,
01:18:34community based interventions.
01:18:35And her is just one example of
01:18:38our community based intervention.
01:18:40We have built a clinic out in the
01:18:43inner city here in in Maryland,
01:18:45near the District of Columbia
01:18:47Line and we turned an overflow
01:18:49parking lot into an urban farm.
01:18:52So when the doctor tells you
01:18:54you need to exercise eat better,
01:18:56we gotta farm outside growing
01:18:58food and the teaching kitchen.
01:19:00We've need to re imagine how we build
01:19:03back in ways that we get out of our silos.
01:19:08And be present in the
01:19:10neighborhoods where people live.
01:19:12It's It's it was such a brilliant
01:19:14insight 'cause one could have
01:19:15easily done what I suspect many do,
01:19:17which is to say that to tell people,
01:19:19don't listen to your Barber.
01:19:21Listen to your doctor but instead
01:19:22the brilliant insight that you
01:19:24had in the folks who started.
01:19:25This whole project was, well,
01:19:26why don't we make sure the Barber
01:19:28really knows what he's talking about
01:19:30is if they're going to listen to him,
01:19:32let's help him understand
01:19:33what he's talking about.
01:19:34You know,
01:19:34so that he so they give some good
01:19:36advice about the pills because it's
01:19:38going to be a trusted source of advice
01:19:40and Mark. Like I said,
01:19:41there are some programs.
01:19:43That have taken this effort and it's OK.
01:19:45We're going to teach the barbers
01:19:47to do the blood pressures.
01:19:49In fact, the randomized clinical
01:19:50trial talking about had the
01:19:52barbers doing the blood pressures.
01:19:54We do not do that.
01:19:56We do not believe that the Barber should be
01:19:59involved in doing clinical assessments. Why?
01:20:02Because the burden of disease is so great.
01:20:07We have literally, when we've had
01:20:09the physicians and doing screen.
01:20:10We have literally sent people
01:20:12immediately to the emergency room.
01:20:13Well where the doctor says, I cannot
01:20:15ethically allow you to leave my presence.
01:20:18You have to bring a family member
01:20:19here on World College squad.
01:20:21Your blood pressure is stroke level.
01:20:24And the person just walking
01:20:26around not knowing it.
01:20:27So the last thing you want is a Barber
01:20:30taking that malignant hypertension pressure.
01:20:32Here's the other thing we've learned, mark.
01:20:36The health professionals When we
01:20:41first took him into the shops,
01:20:43they would walk around with their.
01:20:47Computers, their purses.
01:20:49Check in, is my car still there?
01:20:53And I realize that.
01:20:55The everybody you know all the
01:20:57black people are watching this.
01:20:59What are they afraid of?
01:21:00Kind of a thing.
01:21:01And then I'm realizing that OK,
01:21:03we gotta do some orientation.
01:21:05We can't just let him come
01:21:07in afraid we gotta do.
01:21:08Orientation help folk deal
01:21:10with their own fears,
01:21:11their own biases to understand this natural.
01:21:13'cause some of these neighborhoods are
01:21:15reading about in the paper with all these
01:21:18negative negative things happening.
01:21:19But once we put the the orientation in place,
01:21:23I am telling you more the health
01:21:26professionals were transformed an I
01:21:28think that's exactly what we need.
01:21:30This is not something you can do
01:21:33your city training, you know.
01:21:35Go online and take the quiz.
01:21:37This is not that. This is a long term life.
01:21:41Life long commitment to self reflection
01:21:44in that is how we avoid a future.
01:21:47Tuskegee. We're not going to do.
01:21:49Everything right,
01:21:50but if we commit ourselves to
01:21:53self reflection.
01:21:54If we commit ourselves to doing the
01:21:57right thing for the right reason,
01:21:58if we commit ourselves to not building
01:22:01our careers off the suffering of the people,
01:22:03I think we can make a difference.
01:22:06And that we recognize that it is not
01:22:08enough to do your research and show.
01:22:11Here's a problem. This is a hot spot.
01:22:13And then it's somebody elses job to fix it.
01:22:17We have left that community as
01:22:19a hotspot marked.
01:22:19You want to buy a house in a hotspot?
01:22:21I don't.
01:22:22Karen,
01:22:22do you wanna open up your business
01:22:25in a hotspot?
01:22:26I don't so even our language
01:22:28when we're trying to help.
01:22:30The community can stigmatize the community.
01:22:33This is,
01:22:33This
01:22:33is why I'm so pleased this
01:22:35is being recorded now.
01:22:36I'll remind the folks in the audience know,
01:22:38because the last the last two minutes
01:22:41or something that I want to go back
01:22:43and look again at a couple times
01:22:44and listen to a couple of times,
01:22:46I'm going to Scroll down
01:22:48and find another question.
01:22:49But I gotta go through about
01:22:50100 people who really pissed off
01:22:52with Mr Green's doctor. So if
01:22:54I can get past them, well, let me tell
01:22:56you about those people mad at Mr Green.
01:22:58'cause every time I show this doctor,
01:23:00yeah, the doctor.
01:23:01Every time I show particularly have
01:23:02medical professionals, they're all upset.
01:23:04Nobody knows Mr Green.
01:23:05Nobody is Mr Green.
01:23:06Mr Heart Doctor, Archer,
01:23:07but the reality is they all know a doctor.
01:23:10Are they all know somebody like that?
01:23:13And we just have to admit.
01:23:16That Doctor Archer is a clinical
01:23:19researcher his his thing is not
01:23:21going to get people in this trial.
01:23:23He's thinking that when
01:23:24Doctor Mr Green comes in,
01:23:26he's ready for the trial.
01:23:29Doctor Archer has no idea
01:23:31that emergency rooms, a mess.
01:23:32He has no idea people can't pay
01:23:34for these cystoscopy as screening.
01:23:36That's not his job and now I'm
01:23:39trying to tell him if you want
01:23:41to get these clinical trials and
01:23:43have diverse patient populations,
01:23:45how your hospital system treats them matters.
01:23:47You gotta care about that too.
01:23:50Yeah,
01:23:50you know, and of course those of
01:23:52us who don't do a lot of clinical
01:23:54research but work in the clinical
01:23:55clinical arena recognize the exact
01:23:57same thing and and and so much of it.
01:24:00It's so much of it comes
01:24:01down to taking the time.
01:24:03And of course one of the things
01:24:04is watching this at this guys.
01:24:06This guys gotta get 8 patient signed
01:24:08up its subjects, not patient states
01:24:09subject signed up before lunch.
01:24:11And then he's Gotta Rock
01:24:12and roll through this.
01:24:13He doesn't have time.
01:24:14Just telling this guy that he's
01:24:16not going to survive this disease,
01:24:18and maybe this requires
01:24:19more than 10 seconds, you
01:24:20know? So that was conversation one.
01:24:22And listen all based on real transcripts.
01:24:24That really did happen.
01:24:26Then we put doctor Archer through
01:24:28the building trust training,
01:24:30and then there's a Part 2 and
01:24:32the actual amount of time the
01:24:34interaction is the same amount of
01:24:36time but with active listening.
01:24:39Doctor Archer shakes his hand.
01:24:41Doctor Archer let him tell his
01:24:44story without interrupting him.
01:24:46It did not take anymore time.
01:24:47It's all about attitude and approach.
01:24:49It can be learned well.
01:24:50That's huge because I would
01:24:52have said, Well, you need to give
01:24:54it about 10 times as much time as
01:24:56you're given that you're telling
01:24:58me is that if you do it right,
01:25:00you may not need so much more time.
01:25:02And I also think it's important
01:25:04that when the community comes to us,
01:25:06when doctor Archer learned about what Mr.
01:25:08Green's experience was in the ER,
01:25:10he should take it as his responsibility
01:25:12representing the institution.
01:25:13I'm going to look into that for you,
01:25:15Mr Green. I'm gonna find out
01:25:17why there was such a delay.
01:25:18I'm going to find out why you had to come
01:25:21out of your own pocket to raise the money.
01:25:24For that, cystoscopy show that
01:25:26you can be an advocate for him.
01:25:28That's what we can do.
01:25:30All my friends out there who
01:25:32have privileged color white
01:25:33privilege called medical call.
01:25:35Whatever privilege you have,
01:25:37we all have privilege.
01:25:39We need to use that privilege.
01:25:41In the interest of the most disadvantaged.
01:25:46Thank
01:25:47you so much. We have just a minute
01:25:49left and there's one so many.
01:25:51So much of this are just things
01:25:53saying what a wonderful talk it was.
01:25:56An also and thanking you.
01:25:57But I have one comment here in particular.
01:26:00Then I'll read and this will be
01:26:02the last question that will do,
01:26:04and it may require a longer response,
01:26:06but I'll ask you to at least
01:26:08briefly response, but if you can,
01:26:10your work is profoundly inspirational to me.
01:26:13Thank you.
01:26:13I'm wondering if you can speak at all,
01:26:16but how the dual epidemics of
01:26:18COVID-19 and police brutality have
01:26:19impacted African American communities?
01:26:21Have the Barber shops provided
01:26:22a safe space for dialogue,
01:26:24social support,
01:26:25and advocacy for both epidemics.
01:26:27Why I think that it's a very very
01:26:31good question because it is the
01:26:34confluence of the COVID-19 pandemic.
01:26:37The disproportion burden on racial
01:26:39ethnic minority communities exposing
01:26:41that longstanding health disparities.
01:26:44And then the racial reckoning
01:26:47in our country, that is.
01:26:49That has created the space for
01:26:51fundamental change fundamental change.
01:26:54So let me tell you something else
01:26:56about the barbershop that's very,
01:26:58very interesting and different.
01:26:59Very different than the church.
01:27:03I've been in the barbershop where
01:27:05there's been a sitting judge.
01:27:09A man who works on the
01:27:12loading dock at Safeway.
01:27:14An unemployed person Anna homeless man.
01:27:18All sitting together.
01:27:21Where does that happen?
01:27:23Very few places.
01:27:24That's why the space I call it sacred space.
01:27:30So as we begin thinking about
01:27:31how do we work in Barber shops,
01:27:33how do we globalize how we do our thing?
01:27:35Whatever we do, let's not break it.
01:27:37Let's not break.
01:27:39This is one of the few places mark where
01:27:43I've heard black men simply belly laugh.
01:27:47Out loud not lol but really laugh out
01:27:50loud in real life so we have brought
01:27:53mental health professionals in.
01:27:54We've done mental health counseling in the
01:27:57shops in privacy with creative privacy space.
01:28:00And one of the shops we renovated, the shop.
01:28:04We did PSA blood draws and Rectal
01:28:07digital exams in the barbershop
01:28:09for prostate cancer screening.
01:28:11It's a tremendous way of impacting a culture.
01:28:16And then we asked the barbers their
01:28:18thoughts about how we improve things,
01:28:21and they have really,
01:28:22really good ideas.
01:28:24So I think that if we had
01:28:27white police officers.
01:28:28Get their hair cut in a black Barber shop.
01:28:33Maybe the next time they stop a
01:28:35black man they won't think of a
01:28:38thug as the very first thing.
01:28:40They may think, hey, that could be Jimmy.
01:28:43That could be my Barber that could be Fred.
01:28:48That could be Mike.
01:28:49Get over the fear and if we don't create
01:28:52spaces where we're mixing like that,
01:28:55I think that as a country we're in trouble.
01:28:58But COVID-19 is opened up an
01:29:01opportunity as we come back.
01:29:03Better to do so in a way that we make
01:29:06these spaces places where we save lives.
01:29:10I'm broke into the of the spectrum.
01:29:14Fantastic thank you so much.
01:29:15Our time is up.
01:29:16This has been a Marvel seeding
01:29:18as I thought it would but you
01:29:19have exceeded expectations.
01:29:20Professor Thomas.
01:29:21This has been marvelous.
01:29:22We're going to post some of the
01:29:23information is this talk is also
01:29:25going to be available in the website
01:29:27and this is the part where I hand
01:29:28you a couple of Yale souvenirs but
01:29:30instead were going to Mail him.
01:29:32And this is the part when I go out
01:29:34with you in a couple of the group
01:29:36and we get a nice meal and we're
01:29:38going to have to put that on hold.
01:29:40But remember that when we owe you
01:29:41'cause we sure do appreciate this.
01:29:43This was terrific. Thank you so much.
01:29:45It's
01:29:45been an honor and a pleasure.
01:29:46Thank you very very much. Bye bye OK,
01:29:49well we'll sign off and.
01:29:52Thank you all. Will see you next time.