Richard Benson - NIH Health Equity Strategic Planning
October 27, 2021ID7078
To CiteDCA Citation Guide
- 00:00Uhm? So I have nothing to disclose.
- 00:05UM, so this morning I'm going to talk
- 00:08about the NINDS mission related to
- 00:11HealthEquity and health disparities.
- 00:14I'm then going to talk about my office
- 00:17and what we do and then go into talking
- 00:21about health disparities using stroke,
- 00:23asmodel racism and unconscious bias.
- 00:26And then our strategic planning process.
- 00:28Some RFI information, and then some of our
- 00:31diversity training programs. And then.
- 00:33We should have time for some questions
- 00:35at the end to have a nice discussion,
- 00:37so the mission of the NINDS is to
- 00:40seek fundamental knowledge about
- 00:41the brain and nervous system,
- 00:43and to use that knowledge to reduce the
- 00:45burden of neurological disease for all.
- 00:48And we have highlighted here for all,
- 00:50because this includes everyone from
- 00:52every strata and every group of society.
- 00:55This is, this information was recently
- 00:58presented at the HealthEquity Symposium
- 01:00or Headway Symposium that we had.
- 01:03Last week in our institute director
- 01:06Dr Korsets UM highlights this for
- 01:09all peace in this very important
- 01:12'cause that oftentimes is forgotten,
- 01:16and we do this,
- 01:17we we reach our goals by investing in basic,
- 01:20translational clinical research
- 01:21and we do that in the extramural
- 01:24community through funding.
- 01:25Investigators like yourselves
- 01:26as well as on the NIH campus.
- 01:29We identify gaps in research
- 01:31and public health needs.
- 01:32We train.
- 01:34Talented and diverse work researchers
- 01:37and our next generation of researchers.
- 01:39We support the development of tools and
- 01:41resources to enable discoveries and we
- 01:44like to communicate that information
- 01:46to our stakeholders and including the
- 01:48public and then evaluate the efficacy
- 01:51of the various programs that we have.
- 01:54The NINDS back in the around 2010
- 01:56or so created a health disparity
- 01:59statement at that time based upon
- 02:01the recommendation from the 1st.
- 02:04Uhm,
- 02:04health disparities panel that was
- 02:07organized at that time and they
- 02:09came up with this statement that
- 02:11the NIDS is committed to reducing
- 02:13the disproportionate burden of
- 02:15neurological disease borne by
- 02:17underserved groups in society,
- 02:18including racial and ethnic
- 02:20minority rule and socio economically
- 02:23disadvantaged populations.
- 02:25By funding a spectrum of research from
- 02:28basic science through clinical studies
- 02:30and training the next generation of
- 02:32health disparities investigators.
- 02:34My office which was created back in August
- 02:37of 2019 when I came back to the NIDS,
- 02:41I was previously at the end.
- 02:42Yes,
- 02:42I left and then came back in August of 2019,
- 02:46leads the coordination and development
- 02:49of programs and initiatives that
- 02:51foster national international research
- 02:53on disparities and inequities
- 02:54in neurological disease,
- 02:56and our Jeff are jected.
- 02:58Our objectives include building sustainable
- 03:00capacity and lower middle income
- 03:03countries to conduct and apply research.
- 03:05Best public health challenges
- 03:07associated with neurological disorders.
- 03:09Supporting bilateral partnerships
- 03:10between the US and middle to high
- 03:13income countries and research areas
- 03:15that are of mutual interests and
- 03:17advancing research on tailored
- 03:19prevention and treatment strategies
- 03:21aimed at improving health outcomes and
- 03:24underserved and understudied populations.
- 03:25In EU S and this includes racial
- 03:28and ethnic minority groups.
- 03:30People who live in rural areas,
- 03:32sexual gender minority groups
- 03:34and socio economically.
- 03:35Disadvantaged populations.
- 03:36And we do this through investing
- 03:39in research and training,
- 03:41and we're currently going through
- 03:43a process to determine our our
- 03:46our plans for the next 10 years.
- 03:48In order to address these this process.
- 03:52I list here are some of the
- 03:54major studies that have been
- 03:55funded over the last ten years
- 03:57to address disparities in stroke.
- 03:59Stroke is a major or the the largest
- 04:02neurological disease that that has
- 04:04large areas of disparities that
- 04:06we know about and so stroke can
- 04:08be used as sort of an example of
- 04:10the types of disparities that we
- 04:12see in neurological disorders,
- 04:14and I highlight here the regards study
- 04:16because I'm going to briefly present
- 04:18some data that I'm sure all of you
- 04:21all are familiar with with regards studies.
- 04:23But it actually highlights
- 04:24some of the information, UM?
- 04:26That I'm talking about today,
- 04:28or this just so important in terms of
- 04:30why this HealthEquity is so important.
- 04:32And so when you look at the
- 04:34pattern of stroke in the United
- 04:36States from 1999 to 2018,
- 04:40I have here listed the age adjusted
- 04:43stroke mortality per 100,000 and this
- 04:46data is from some of George Howard data
- 04:49and this is looking from 1999 to 2017.
- 04:53We can see that there's been
- 04:55a decrease in stroke.
- 04:57Mortality from 1999 to 2017
- 05:00for white Americans.
- 05:02For black Americans,
- 05:04Hispanic Americans, Asian Americans,
- 05:07and Native Americans.
- 05:09However,
- 05:09when we look at the mortality ratio
- 05:12for these groups comparing to whites,
- 05:15we see that there has been a sustained
- 05:18increase and the mortality ratio from
- 05:201999 to 2017 for blacks and addition.
- 05:24From this slide,
- 05:25we can see that there are certain
- 05:27groups in the United States.
- 05:28That actually have lower
- 05:30mortality ratios than whites,
- 05:32and this is something else that's
- 05:33not talked about that we need to
- 05:35look into more in terms of why there
- 05:37are other groups that have a lower
- 05:39mortality rate from stroke than
- 05:42these than whites in this country.
- 05:46So Doctor Howard actually goes
- 05:48on to say that in fact,
- 05:49between 1949 and 1951 the white to
- 05:52non white and at that time it was
- 05:55mainly largely black populations
- 05:56in the United States.
- 05:58Show print Ality was 1.63 for
- 06:01men and one and 19.2 for women,
- 06:04and so he states that in fact
- 06:06we made little progress.
- 06:08Reduce racial disparities in
- 06:09stroke in the last 70 years,
- 06:12and this is pretty startling to consider.
- 06:15In addition to the race,
- 06:17ethnic disparities that just talked about,
- 06:19we know that there are large regional and
- 06:22geographic disparities and stroke as well,
- 06:24and this is something that.
- 06:27Has to be looked into more and
- 06:29it's related to some of the other
- 06:32factors that we're going to talk
- 06:34about today in terms of why we
- 06:36make some of the reasons in terms
- 06:37of why we have these regional
- 06:39geographic factors as well,
- 06:41like here in the stroke belt in
- 06:43the Southeastern United States,
- 06:44we know that in these areas
- 06:46you have large populations
- 06:48of of African Americans.
- 06:49We also have issues related to
- 06:53socioeconomic status and distance.
- 06:55To get to the hospital and.
- 06:58And other issues or social determinants of
- 07:00health that we know are very important.
- 07:02Now you may ask and say, well,
- 07:04yes, we see that and stroke and
- 07:06that may be something unique.
- 07:08But when you look in medicine
- 07:10and other fields we still see
- 07:11that there are large disparities.
- 07:13This really startling report was
- 07:16published in August of 2020,
- 07:19and it looked at newborns,
- 07:22black sand and white,
- 07:23and they found that versus white.
- 07:25And they found that black newborns
- 07:27were more likely to die when
- 07:29looked after by white doctors,
- 07:30and the same was not true when.
- 07:33Some white newborns were looked after by
- 07:35black doctors and this is really hard.
- 07:38It's very startling and really hard
- 07:40to sort of explain why we have this
- 07:43sort of discordance in terms of
- 07:45disparities and neonatal outcomes.
- 07:48Additionally,
- 07:48there's been work that showed that
- 07:50there we know that in the United
- 07:53States in general when we look
- 07:55at maternal mortality rates that
- 07:57that we are doing terrible,
- 07:59we should be doing much better when you
- 08:01look at the income of the United States.
- 08:03But for African Americans,
- 08:04it's really striking in terms
- 08:06of the high mortality rates for
- 08:08African American women,
- 08:09and this is something that's
- 08:11been overlooked a lot.
- 08:12And again, how does this?
- 08:14How do we explain this?
- 08:15This suggests a more systemic
- 08:17problem in our health care system.
- 08:19When we see these large.
- 08:21Disparities.
- 08:22We also note that in those areas,
- 08:26states,
- 08:26or areas in the country that
- 08:28actually report on reported on some
- 08:31of the death rates from COVID-19,
- 08:33we see that there is a black white
- 08:35disparity in terms of the the death rates.
- 08:38We also see disparities when
- 08:39you look at Native Americans,
- 08:41which has not been talked about
- 08:43as much as well as Hispanic
- 08:44populations in the United States.
- 08:46So these are just sort of very startling
- 08:49findings that we see and difficult.
- 08:51Explain however we know back in
- 08:552003 since the awhile ago as well,
- 08:58almost the less than 20 years ago,
- 09:01the Institute of American,
- 09:03now known as the National Academies
- 09:05of Science pubs to report titled
- 09:08unequal Treatment Confronting Racial
- 09:10and Ethnic Disparities in health
- 09:12care and this report concluded that
- 09:14racial and ethnic disparities in
- 09:16healthcare do exist and that sources,
- 09:19including health care systems,
- 09:21health care providers.
- 09:23Patience and utilization managers
- 09:25are contributors and so this is
- 09:28again startling considering that
- 09:29most of us that our health care
- 09:32providers to think that we are
- 09:34contributing to some of these
- 09:35disparities that we see out there.
- 09:37This was the first time that this
- 09:40was published on such a large scale
- 09:43and and yet that was in 2003.
- 09:46We still are lacking in terms of
- 09:50really addressing these issues.
- 09:52Back in August of 2020,
- 09:55Dr Olajide Williams and Doctor Bruce Obvio,
- 10:00Bali public published an article
- 10:02titled Stroking Out while Black
- 10:04the complex role of racism,
- 10:06and they actually cited
- 10:08some of the regards data,
- 10:10stating that the regards study found
- 10:13that only 40% of the black white
- 10:15incidents disparities is attributed to
- 10:18prevalence of traditional risk factors,
- 10:20and so they conclude that.
- 10:2260% of the remaining disparities
- 10:25are related to unclear factors,
- 10:27and some of these,
- 10:28some of that 60% could be related
- 10:31to the levels of racism framework,
- 10:33which includes structural,
- 10:35personal, and internalized racism,
- 10:38and that they figure that they
- 10:41concluded that the NIH or the NMDS
- 10:44should focus on funding research
- 10:47through more than equity lens.
- 10:50I have here some diagrams just
- 10:52to sort of highlight those,
- 10:53the structural, the racism levels
- 10:58of racism framework we have first.
- 11:01Intrapersonal racism,
- 11:02and that's sort of the internalized
- 11:05racism of an individual.
- 11:08That's where people internalize
- 11:10the negative views of themselves.
- 11:12And because of that,
- 11:15develop negative behaviors that are.
- 11:18Have negative outcomes for the individual,
- 11:21and so that's sort of internalized racism.
- 11:23And then we have the interpersonal racism,
- 11:25and that's when one person does
- 11:28something negative towards someone else.
- 11:30That's something conscious that someone
- 11:32does towards someone else that this harmful.
- 11:35That sort of that interpersonal racism.
- 11:37We know that that's bad as well,
- 11:40and we see here.
- 11:41This is a visual of a lynching in the past,
- 11:45and you see groups of individuals
- 11:46standing around looking at this.
- 11:48I think that this is probably
- 11:50what happened back with the world
- 11:53watching the murder of George Floyd.
- 11:55This is probably similar to that it
- 11:58was an instance and time where you
- 12:00had people that actually sat and just
- 12:02were able to look at a murder and at
- 12:05that time and I think that was well,
- 12:07it sort of has or one thing that
- 12:09sort of has energized or sparked his
- 12:11renewal to sort of address this.
- 12:13This idea of ****** you know we have.
- 12:16But then the more ominous and
- 12:19more difficult to control.
- 12:21Form of racism is structural racism
- 12:23and structural racism is when those
- 12:26structures that are put in place
- 12:27so that if no one does anything.
- 12:30If if a person who is usually receives
- 12:35the negative end of the racism,
- 12:37tries to do everything positive
- 12:39goes to school.
- 12:40East healthy exercise is that person
- 12:43still because of the structure
- 12:45that's in place is impacted by
- 12:47that structure in a negative way.
- 12:49Or if no one does, if one person doesn't do.
- 12:51Anything to against anyone else still,
- 12:55though, that structure is in place,
- 12:57and so that that's a little
- 12:58bit more difficult to address,
- 13:00and this one example of this is when
- 13:03we think of the data associating
- 13:05ZIP codes with mortality.
- 13:07We can look at the ZIP codes in
- 13:09the United States and determine the
- 13:11mortality rates in those neighborhoods.
- 13:13Also,
- 13:13this idea of structural racism impacts
- 13:17people in terms of housing being able
- 13:20to buy a house in a certain area.
- 13:21Certain areas not having access to good
- 13:24health care, not having hospitals,
- 13:27creating food deserts,
- 13:28no spaces for people to exercise those
- 13:31types of things are not the fault of the
- 13:34individuals that live in those areas.
- 13:36It's just part of the structure
- 13:38that's set up and a lot of these
- 13:41things that we consider race and
- 13:43race is actually a social construct.
- 13:45It's not a biological varier variable.
- 13:48Race is just determined for most
- 13:50people based upon what they think.
- 13:52About someone when they look at them and
- 13:54look at their skin color and determine
- 13:56your of this race or a different race.
- 13:59Race is not if a person goes to the
- 14:02medical doctor or hospital to be seen,
- 14:04that person's race could be department
- 14:06the same way as if someone walked into
- 14:09a bank to apply for housing loan.
- 14:11It's just basically related to skin
- 14:14color and that race or that skin color is
- 14:19actually not a biological variable but up.
- 14:22Proxy for social determinants of
- 14:25health and other structural racism
- 14:27that we have and in structural racism
- 14:30is one of the social determinants of
- 14:32health here in the United States.
- 14:35I like the schematic here because it shows
- 14:38what is the reality for a lot of people.
- 14:40And then this concept of equality
- 14:43equity and then liberation we have
- 14:45here on the left side of the screen.
- 14:48Diagram of three gentlemen watching
- 14:50a baseball game.
- 14:52See that one person has a great
- 14:55view standing on multiple multiple
- 14:57baskets in order to see the game,
- 15:00and then we see one person
- 15:01that has one basket.
- 15:02Is able to see over the fence and then
- 15:04see the game and then we see the last
- 15:07individual that's shorter than the other
- 15:08two and also happens to be standing
- 15:10in a ditch and can't see anything.
- 15:13And then next we see the quality
- 15:15where we say, OK,
- 15:16let's just give everybody the same.
- 15:18Thing when you do that,
- 15:19you don't take into account
- 15:22those intrinsic differences that
- 15:24people have that may impact them,
- 15:26and so we can see just by giving
- 15:29everyone the same thing that that short
- 15:32individual still can't see over the fence.
- 15:34And keep in mind that that short
- 15:37individual has a very unique perspective
- 15:39and that can actually offer a lot
- 15:41if you asked in terms of defects
- 15:43in the fence or anything about the
- 15:45ground that person has been able to
- 15:47see a lot and can actually offer.
- 15:49A lot of information,
- 15:50valuable information to the other
- 15:51two people watching the game,
- 15:53and so input from that person is very
- 15:56important. And then we have equity.
- 15:57And that's when you give everyone
- 15:59exactly what they need so that everyone
- 16:01has a chance to the all three of the
- 16:03individuals have a chance to see the game,
- 16:05and we can see you have to give one of
- 16:07the baskets to the middle gentleman
- 16:10and then give two to the other so
- 16:13that now they can all see the game.
- 16:15But then you ask the question,
- 16:17why is the fence there in the first place?
- 16:19Do we actually need defense or
- 16:21is it better to have a fence?
- 16:23That's that you can see through or some.
- 16:26Other type of barrier so that everyone can
- 16:28see and you don't have to deal with those.
- 16:31And that's sort of the state of liberation.
- 16:33I like this schematic because it's sort of.
- 16:35It explains those structures that
- 16:37are out there that are not under
- 16:39the control of the individuals.
- 16:41For the most part.
- 16:42So now I'm going to sort of pivot and talk
- 16:45about unconscious bias and conscious bias.
- 16:48So conscious bias is sort of that.
- 16:50Interpersonal racism where someone
- 16:52just has a negative idea against
- 16:55someone else and they just explicitly
- 16:58state that and they're aware of it,
- 17:00and it operates consciously,
- 17:02such as if someone says I,
- 17:04I like whites more than Latinos,
- 17:07that's a very conscious decision or
- 17:10comment for someone to make, but.
- 17:13Those things that are more difficult
- 17:14to see are sort of those unconscious,
- 17:16unconscious, or implicit biases,
- 17:18and those are people aren't aware
- 17:21of these types of biases and
- 17:24they they operate subconsciously.
- 17:26For example,
- 17:26if you're on a bus and and a white
- 17:29individual sits further away from a
- 17:32Latino individual but never says anything,
- 17:35that's more of the implicit
- 17:36or unconscious bias.
- 17:38Now all of us have biases and the
- 17:40issue is that it's important for
- 17:42us to be aware of our biases,
- 17:44particularly in health care,
- 17:45because they can have dramatic impact.
- 17:48There's something called micro behaviors,
- 17:50and micro behaviors are sort
- 17:52of small or fleeting.
- 17:53Verbal or nonverbal ways that we act or
- 17:56respond when we interact with others,
- 17:58and micro behaviors can be
- 18:00oriented positively, such as, oh,
- 18:02that's a really great comment.
- 18:04Oh, that's really novel.
- 18:05I'm glad you said that, so that's the.
- 18:08Positive Marco validation or it can be
- 18:11negative or I can't believe you said
- 18:13that or everyone knows that or that.
- 18:15That's sort of common knowledge,
- 18:17though that's more of a negative
- 18:20micro aggression.
- 18:21And so this happens all the time.
- 18:24This can impact colleagues,
- 18:26young investigators just coming
- 18:28into a department,
- 18:30people from who don't feel a part of
- 18:32the group for for whatever reason.
- 18:34And so we have to think about these
- 18:36types of interactions with our
- 18:38colleagues as well as with our patients.
- 18:40Uhm,
- 18:40that we're interacting with all the time.
- 18:43And so these micro validations they
- 18:45can support or they can foster teamwork
- 18:48and collaboration and they can lead
- 18:50to a positive work environment if a
- 18:52person is in a positive work environment,
- 18:55that person is more apt to to do better
- 18:58to be more productive and and more
- 19:00happy about putting in extra time doing work.
- 19:03And it can lead to in a patient
- 19:05provider setting it can lead to
- 19:07adherence to orders or their plans
- 19:09from the medical provider.
- 19:11Micro aggressions however can degrade.
- 19:14Communication and can lead to
- 19:15non compliance and it can lead
- 19:18to people feeling stressed,
- 19:19not wanting to stay in a
- 19:21particular academic environment.
- 19:22Wanting to change labs or one just
- 19:24to leave the institution or leave
- 19:27academic medicine in general.
- 19:29So these are things that we have to
- 19:31be aware of and look at and this is
- 19:33important because EU S population
- 19:35is becoming more diverse and so the
- 19:37odds of intercultural provider,
- 19:40patient or colleague to colleague
- 19:43interactions are increasing.
- 19:44Rapidly, and so if you look
- 19:47directly in healthcare workers,
- 19:49ethnic minorities form a
- 19:50majority of the workforce,
- 19:52and so in any clinical encounter,
- 19:54both the clinician and the patient
- 19:56have to adhere to principles
- 19:57of civility and respect.
- 19:59Respectful interactions to each other.
- 20:02So it's important for all academic
- 20:05institutions research institutions
- 20:07to have cultural competency,
- 20:09and this is the integration and
- 20:12transformation of knowledge
- 20:13about individuals and groups.
- 20:14The people into specific standards,
- 20:17policies and practices and attitudes
- 20:20used inappropriate cultural settings
- 20:21to increase the quality of services,
- 20:24thereby producing better outcomes.
- 20:26The ability to think,
- 20:28feel,
- 20:28and act in ways that acknowledge and
- 20:30respect and build up on ethnic socio.
- 20:33Cultural and linguistic diversity.
- 20:36And so now I'm going to sort of
- 20:38talk about what we're doing at
- 20:40the end I age and an IDs related
- 20:42to the health disparities.
- 20:43So I'm going to talk about some
- 20:45of the things that that we're
- 20:46specifically doing at the IDs,
- 20:48and so when my office started back in 2019,
- 20:51we sort of reviewed the report
- 20:53that was created by the panel
- 20:56that was put together and 2011.
- 20:58We created another working group
- 21:01of our National Advisory Council.
- 21:03We created something called the
- 21:05Hugh or the HealthEquity workgroup,
- 21:06which is.
- 21:07A group of volunteers from the
- 21:12ANINDS staff to work with issues
- 21:16surrounding health disparities.
- 21:18We had an RFI that was published
- 21:20from March 31st July 15th of
- 21:232021 and we asked people,
- 21:24could they tell us what they felt were
- 21:27areas of disparities in neurological
- 21:29disorders, services or care.
- 21:31And we wanted to get input from everyone.
- 21:34All levels of society,
- 21:35from patients family members.
- 21:37Caregivers advocacy groups.
- 21:39UM medical providers researchers.
- 21:42We wanted input from everyone just to
- 21:45see what people thought were areas of
- 21:47health inequities and neurological disorders.
- 21:50And then we,
- 21:50the capstone of this process,
- 21:52was our head.
- 21:53We workshop that took place in
- 21:55the end of September and we're
- 21:57going to have this information
- 21:59presented to our National Advisory
- 22:01Council in February and then.
- 22:03The results will also be published as well.
- 22:07And so just to talk about our
- 22:09fire requests for information,
- 22:12I've mentioned the dates that was published.
- 22:14We did direct solicitation to various
- 22:16groups to get this information,
- 22:18and we received over 141 responses,
- 22:21which is a lot 'cause some of the
- 22:24responses were grouped responses as
- 22:26well responses for organizations.
- 22:28We asked multiple choice questions,
- 22:30short answer questions,
- 22:32and then we did qualitative analysis.
- 22:35Obviously quantitative,
- 22:36and we categorize that.
- 22:38Information in order to come to
- 22:41analyze the data and the responses,
- 22:44and this is what we have I have
- 22:47here on the diagram on your right.
- 22:49Just the the percentage of responders
- 22:51that were health care providers,
- 22:53researchers, patient advocates,
- 22:54patients and caregivers and we
- 22:56had a few government officials
- 22:59that responded as well to RFI.
- 23:01Most of the responses
- 23:03came from the northeast.
- 23:05We had the fewest responses
- 23:08from the Southwest.
- 23:09And we did have some international responses,
- 23:12although we're looking primarily for
- 23:15health disparities in the United States
- 23:17and you can see a major gap that we had.
- 23:20Is that a lot of our information
- 23:22came from urban and suburban areas,
- 23:24and we had very few rural responses.
- 23:26So when we do this in the future,
- 23:29we're going to have to build
- 23:30in mechanisms to try to over
- 23:33sample from rural areas as well.
- 23:35And this this is unfortunate.
- 23:36'cause, again,
- 23:37it's an area of health disparities,
- 23:38so it is something we have
- 23:39to think about in the.
- 23:40Future in terms of when we put
- 23:43out these requests for information
- 23:46and we have here the region based
- 23:49upon the organizational types.
- 23:51Most of our responses were
- 23:53from individuals over 61,
- 23:54but we did receive 39% responses
- 23:57from organizations as well.
- 24:00And this slide just shows sort of the,
- 24:03UM,
- 24:03the whole list of the various
- 24:05types of organizations that
- 24:07we received responses from,
- 24:09and most of them were related to TBI.
- 24:12Obviously stroke and pain,
- 24:13so these were some some of the larger areas.
- 24:16But then there were other areas
- 24:19too for some rare diseases
- 24:21where we received responses.
- 24:23And as you would imagine in terms
- 24:25of neurological areas of disparity,
- 24:27stroke was at the top of the list,
- 24:29and so we know that this is
- 24:30a major area of disparities.
- 24:32But some of the other areas listed here.
- 24:34You know you may or may not have
- 24:36thought about these brain injuries.
- 24:37A major area people felt pain,
- 24:40dementia, neurodevelopmental disease,
- 24:44epilepsy, Parkinson's,
- 24:46spinal cord injury,
- 24:47seizure and so these are a lot of
- 24:49other areas of neurological disorders
- 24:51that are periods of disparities.
- 24:54And if you look at the vulnerable
- 24:56populations again when we think of
- 24:57HealthEquity or health disparities,
- 24:59people automatically go to race ethnicity.
- 25:01And I mentioned that race is
- 25:03a social construct.
- 25:04But what you can see,
- 25:06and so this made us feel good in
- 25:08terms of looking at the RFI data
- 25:11that most people felt that low
- 25:13SES or that was sort of one of
- 25:15the most significant vulnerable
- 25:17populations to look at.
- 25:19And so again,
- 25:21this points to the strong impact of.
- 25:24Social determinants of health
- 25:26and how race can be used as a
- 25:28marker of one of the socio of
- 25:31social determinants of health.
- 25:33But then we have geographic disadvantage
- 25:35on uninsured or underinsured
- 25:37disabled sexual gender minorities.
- 25:40This is a large population.
- 25:41It hasn't been studied that we're
- 25:43looking more into now and then.
- 25:46Pediatric elderly and then those
- 25:48others that we have listed there.
- 25:50We use this information that we
- 25:53actually mapped it to the the
- 25:56National Institute of Minority.
- 25:58Health and Health Disparities
- 26:00Institute and I'm HD and their
- 26:02framework and it falls into these few
- 26:05categories that we have listed here again.
- 26:08And so healthcare affordability was a
- 26:12major determinant that came out from
- 26:14our RF eye as well as these other
- 26:17factors that we see listed here.
- 26:19We asked people to suggest interventions
- 26:22and so we had really great input in
- 26:26terms of interventions that people have.
- 26:29For instance, just having in
- 26:31terms of health service,
- 26:33making sure that there's someone
- 26:35who's Spanish speaking there.
- 26:37This on staff having someone that
- 26:39sort of looks like a person from
- 26:42that community is very important.
- 26:44We know it's important for increasing
- 26:47enrollment and clinical trials as well as.
- 26:51Uh, having a better healthcare
- 26:53interactions and we know this is an issue.
- 26:57This was just actually I know.
- 26:59Doctor Lazar mentioned this is
- 27:00an issue at the end in terms of
- 27:03the whole Spanish speaking issue,
- 27:04but we know that this is important
- 27:07'cause it does impact.
- 27:09People in terms of our our health
- 27:11care system and and research and
- 27:13so that that was our RFI and so
- 27:15now I'm going to present data from
- 27:18our health disparities portfolio.
- 27:20At the outset I mentioned some of the
- 27:23studies that the NMDS funded over
- 27:25the last ten years related to stroke.
- 27:28And So what we did was we went back
- 27:29and said OK over the last five years,
- 27:31we did five years because we actually
- 27:34wanted to be very rigorous in terms
- 27:38of this process.
- 27:39And so we actually created a standard
- 27:42operating procedure we created and
- 27:45instituted validity and reliability testing,
- 27:49and to the process to make sure that
- 27:51the information that we pulled was accurate.
- 27:53And so doing all of this,
- 27:56it required a lot of input from our Q
- 27:59or HealthEquity volunteers through the NIDS,
- 28:03and so we were able to do five years.
- 28:05So we looked at what the NINDS
- 28:07had funded related to health.
- 28:09Disparities are health equity
- 28:11research over the last five years,
- 28:13and we use the healthy people
- 28:162030 or 2020 definition, too.
- 28:20And two is to make our to determine
- 28:24or categorize what we felt was health
- 28:27disparities or HealthEquity related.
- 28:29And we looked at all competing grants,
- 28:31so these were applications that were
- 28:33competing. We looked at subprojects.
- 28:35We looked at supplements and that
- 28:38were active from January 1st through
- 28:40December 31st of FY20, 6 to 2020.
- 28:44And then we also categorized this
- 28:46to the NIMHD framework and we did
- 28:49the validity and.
- 28:51Reliability testing that we talked
- 28:52about and then we use this information
- 28:55and we provided this information to
- 28:58our HealthEquity Strategic Working
- 29:00Group of the National Advisory Council
- 29:02and this was also presented at our
- 29:05Headway Workshop in the mid September.
- 29:10And so come from during that five year
- 29:14period we had over 9100 applications
- 29:18that were that were active and
- 29:21funded during that time period.
- 29:24We did an initial screening of that
- 29:27and was able were able to narrow
- 29:30that down to 910 applications.
- 29:32We then went into our coding
- 29:34specifically based
- 29:35upon the the healthy penny Healthy
- 29:38people 2020 definition and some.
- 29:40Other criteria that we came up
- 29:42with and in order to make sure that
- 29:44the applications were specifically
- 29:46related to health disparities.
- 29:48And it wasn't just the study that
- 29:50recruited a lot of diverse populations,
- 29:52which is not considered a health equity
- 29:55or health disparities research trial,
- 29:58but maybe according to the CDC definition,
- 30:01let me go back for a minute.
- 30:03We use the NIH research condition
- 30:06and disease categorization data,
- 30:08which is a database that the NIH uses.
- 30:11In order to classify the research project.
- 30:14And then at last we came up with 58
- 30:18applications during that five year
- 30:20period that were related to HealthEquity.
- 30:22Based on our definition.
- 30:24And again I just want to give this
- 30:27preface that these funding numbers that
- 30:28I'm going to show you next or based
- 30:31upon our portfolio analysis and they
- 30:33don't represent the official publicly
- 30:35reported data that you would get from
- 30:37off the normal databases we did.
- 30:40We looked at this differently in
- 30:41terms of how we analyze this data.
- 30:44So what you can see from this diagram
- 30:46is that the the numbers and the
- 30:48amount of money that was spent by
- 30:52the NINDS to fund health disparities
- 30:56project from 2016 to 2020, 2019.
- 31:00You see that there was A and and again we
- 31:04mentioned the number of projects that we had.
- 31:07The 58 projects.
- 31:10They were funded during 2019.
- 31:12We Co funded some health disparities
- 31:15projects with NHLBI and so that's
- 31:17why there was a bump during that
- 31:20year with the other projects.
- 31:24This slide shows the various types
- 31:26of mechanisms of projects that were
- 31:28funded during this period of time.
- 31:30Most of them were our ones or your ones.
- 31:33However,
- 31:33we do have some cases and deaths
- 31:36which are training mechanisms and
- 31:37then some other mechanisms that
- 31:39we have listed there as well.
- 31:41Of our training awards,
- 31:43we felt that this was a very fruitful
- 31:46area in terms of how money was
- 31:48spent during that five year period.
- 31:51Because we had the most sort of
- 31:53morality of of areas besides stroke,
- 31:56there were funded when it comes to
- 31:57health disparities, we had throat.
- 31:59We had migraine headache, chronic pain,
- 32:02hypertension, CNS infections.
- 32:04So we had a lot of different areas
- 32:06and we also funded some trainees
- 32:09and multiple sclerosis and 80 ADR D.
- 32:12And those areas as well,
- 32:13and so this was a small percentage of
- 32:15the funding during that five year period.
- 32:17But we filled investing in early
- 32:20investigators.
- 32:21That's important in terms of
- 32:23developing the next generation of
- 32:25health disparities investigators.
- 32:27But also,
- 32:28it it sort of added to the plurality
- 32:31of the types of HealthEquity or health
- 32:34disparities related neurologic studies
- 32:36that we have supported at that time.
- 32:39And so here,
- 32:40just again showing the types of projects
- 32:42that were funded during the period of time.
- 32:45Most were related to stroke,
- 32:46but then we had some other
- 32:49areas as well that were funded.
- 32:51Most of these projects were in
- 32:54the sort of clinical
- 32:56space or the T2 space,
- 32:58and I have here examples of of
- 32:59some of the types of studies
- 33:01that fall into this category,
- 33:03but this is where most of the
- 33:05most of the research studies fail,
- 33:07and then the other piece is that most
- 33:09of them were sort of observation.
- 33:11ULL studies in a sort of a list.
- 33:13Here the studies and I'm sure if you
- 33:16read through this little diagram,
- 33:18you'll see that I'm sure is a
- 33:20stroke program stroke programs.
- 33:22You guys are familiar with these studies,
- 33:25but what we'd like to do is sort of
- 33:27move from this sort of observation.
- 33:29Ull space more to the interventional space.
- 33:32There are a lot of interventions
- 33:34that we know that have been
- 33:36developed and have shown efficacy,
- 33:38but just sort of scaling up those
- 33:41interventions and exporting
- 33:42them to different areas is,
- 33:44is is where we need to go particularly.
- 33:46Let's say with blood pressure control,
- 33:48we know blood pressure control
- 33:50is so important for stroke,
- 33:51and now it's a modifiable risk factor.
- 33:54That we know based on Sprint mind
- 33:57for some cognitive impairment,
- 33:59and so we have a lot of good
- 34:02blood pressure medications.
- 34:03We have interventions that have
- 34:05been shown to have efficacy and
- 34:08addressing blood pressure control,
- 34:09and so we really just need to
- 34:12scale this up and and and and
- 34:14and do interventions in various
- 34:16communities in order to address this.
- 34:18So we'd like to move towards that space,
- 34:20'cause that seems to be a large gap,
- 34:23and that's what we've heard from.
- 34:24Some of our work. Uhm, we can see here.
- 34:28Just sort of mapping this to the
- 34:31NIMHD healthcare framework that a
- 34:33lot of the projects sort of focus.
- 34:36Some of them.
- 34:37You can see that this is more than 58
- 34:39and this because some of the projects
- 34:41sort of overlapped with multiple areas.
- 34:43But in general most of them sort of looked
- 34:45at biologic factors for these disparities.
- 34:48And so again,
- 34:49we need to move.
- 34:50We like to have more research and
- 34:52some of these other spaces as well
- 34:54beyond just sort of biological.
- 34:56Factors. And this is again.
- 35:01Something that we have to work
- 35:03on only 16 of the 58 applications
- 35:05actually describe community
- 35:06engagement strategies and so in
- 35:09order to address these disparities,
- 35:11it's very important to engage the community.
- 35:13It's also important to enroll if
- 35:16you're thinking of enrolling diverse
- 35:19populations into clinical trials.
- 35:21It's important,
- 35:22and it's imperative for large
- 35:25academic centers to find a way to
- 35:27get into diverse communities and.
- 35:31That type of relationship takes a while
- 35:33to build up, but it's very important,
- 35:35and so having some type of Community
- 35:37Advisory Board there were only
- 35:39a small number or some type of
- 35:41naturally occurring group like a
- 35:43church group or some type of other
- 35:45Community group working with them.
- 35:47Community health workers or
- 35:49working with neighborhood clinics.
- 35:50So these are areas that we'd
- 35:52like to see more.
- 35:53Academic institutions,
- 35:54including these types of community
- 35:57engagement strategies and
- 35:59their research projects.
- 36:01And so now I'm going to talk about
- 36:03diversity and diversity training
- 36:05and why this is important to the
- 36:07NINDS and so the nid's feels that
- 36:11diversity is important in the
- 36:13NIH feels it's important as well,
- 36:15because recruitment of the best talent at
- 36:18researchers from all groups is important.
- 36:20There's no one group that has a
- 36:23monopoly on intelligence or new ideas,
- 36:25and so it's important to look
- 36:27at all groups and to to pull the
- 36:30best ideas from all groups.
- 36:32And that requires respecting all groups
- 36:34and and listening when and and looking
- 36:36to find people with those unique ideas.
- 36:39It diversity creates improvement in
- 36:41the quality of educational training
- 36:44and environment by listening to the
- 36:46perspectives and the history and
- 36:48the background from diverse people
- 36:50and listen to how information is
- 36:53as given or taught.
- 36:55That actually improves the training and the
- 36:58quality of educational training for everyone.
- 37:00As well it provides.
- 37:02Balanced perspectives in terms of
- 37:04setting research, research priorities,
- 37:06improves the capacity to recruit
- 37:08subjects from diverse backgrounds.
- 37:10In clinical trials,
- 37:11I mentioned this as well.
- 37:12There were couple of large clinical
- 37:15trials I can think of where once they
- 37:19were able to hire research assistants
- 37:21who actually looks like people in the
- 37:24community that they were trying to recruit,
- 37:26they actually were able to boost
- 37:28their recruitment numbers and so
- 37:29that's something important to think
- 37:31about as well and improve capacity.
- 37:33To address health disparities.
- 37:35Now, how does the NIH define diversity?
- 37:39The NIH?
- 37:42Defines or just.
- 37:43The describes individuals from
- 37:45underrepresented and underlying
- 37:47underrepresented racial and ethnic groups.
- 37:50Individuals with disabilities.
- 37:51Those who are defined as those
- 37:53with physical or mental impairment.
- 37:55Individuals with disadvantaged backgrounds
- 37:56and that could be socially, culturally,
- 37:59economically, or educationally.
- 38:01And this applies only through high
- 38:04school and undergraduate level after that,
- 38:07then it's more difficult to show
- 38:09that sort of disadvantaged category.
- 38:12That's the only, UM,
- 38:14only reason that someone is
- 38:17considered diverse.
- 38:19We have an office at NIDS,
- 38:21did sort of deals with diversity training.
- 38:23This is called the Open Office
- 38:25or the Office of Programs to
- 38:27enhance neuroscience workforce.
- 38:28The first thing is led by Doctor
- 38:30Michelle Jones, London my office.
- 38:33We do look at diversity training for people,
- 38:37diversity training and people interested
- 38:40in HealthEquity or health disparities.
- 38:42And we also look at training of
- 38:45everyone related to health disparities.
- 38:48We think that.
- 38:49Health disparities training should be
- 38:51included and graduate and medical school
- 38:54and probably undergraduate curricula as well.
- 38:57It's important if people
- 38:59understand health disparities,
- 39:01unconscious bias and racism,
- 39:02and its role and the health care system,
- 39:05and this is taught on the undergraduate
- 39:08graduate medical school level.
- 39:09This will spark the interest of
- 39:11people who go into these fields,
- 39:13but also we would be able to get diversity
- 39:15as well in this field and and come up
- 39:17with new ideas for addressing these.
- 39:19Areas and so this office from
- 39:21my office deals with it some,
- 39:24but the we have an office that
- 39:27deals specifically with
- 39:29workforce diversity as well. I just list.
- 39:32Here's some of the various programs,
- 39:35uh, or mechanisms, that the NIH uses
- 39:39who come to fund research and research
- 39:43training at various levels. We actually,
- 39:47and I think you probably know this,
- 39:50that we have a well represented group of
- 39:53people that submit our one applications,
- 39:56but it's very hard to get
- 39:57underrepresented groups.
- 39:58We have only 66%, six.
- 40:01Percent from underrepresented groups
- 40:03that actually submit our ones.
- 40:06And we award about 5% to underrepresented
- 40:10individuals and so at any ideas.
- 40:13We have an OC, so if there are any.
- 40:16Uhm, individuals on the call that sort
- 40:18of fall into the UM underrepresented
- 40:21group category that we talked about.
- 40:23If you submit your RO one in
- 40:26response to this particular no see,
- 40:28it creates a flag for that particular
- 40:31application as a high priority.
- 40:33And when we're looking at applications
- 40:37that we're considering funding,
- 40:39we consider this group as sort of a
- 40:42high priority, high priority group.
- 40:43In terms of those that we fund.
- 40:46Uhm as well. There's some other things.
- 40:49Other funding mechanisms that we
- 40:51have for diversity that I have
- 40:52listed here on the slide as well.
- 40:54I'm going to highlight the faculty
- 40:57institutional recruitment for sustainable
- 41:00transformational program or first program.
- 41:03The awards were actually listed last week,
- 41:08last Monday and this was a program
- 41:11that looked for applications of sort
- 41:14of cohort faculty cohort hiring
- 41:17where institutions.
- 41:19Would hire groups of people from
- 41:22underrepresented backgrounds in same
- 41:24time with the idea or thought that
- 41:27if people had a cohort of others
- 41:29that looked like then that started
- 41:32in an academic environment at the
- 41:34same time that we can sustain or
- 41:37decrease the attrition rate of early
- 41:40staged faculty members or early stage
- 41:43investigators and academic institutions,
- 41:45and so that that's sort of the
- 41:47idea of that program we also have.
- 41:50Some other programs to address HealthEquity
- 41:53and structural racism at the NINDS.
- 41:56I suggest that you go to the NIDS website
- 42:00and sort of look at the Unite program.
- 42:04There's a great website for unite
- 42:07and also the Common Fund program.
- 42:10As far as the Common Fund program,
- 42:12it's a program that has a separate
- 42:14line item of funding from the NIH,
- 42:17and they actually fund programs
- 42:19for up to 10 years,
- 42:21and they're usually high risk
- 42:22high reward projects that Dr.
- 42:24Transformation of new ideas, new approaches.
- 42:27We have a committee,
- 42:28and I I'm the anti India's representative
- 42:30on this committee that's developing
- 42:33initiative related to HealthEquity,
- 42:35and it will probably be coming out and.
- 42:39Next year with funding and and 2023
- 42:43and so again, just go and look at this,
- 42:46but it's some of the other things that
- 42:48the NIH is going to address HealthEquity,
- 42:51and some of you I'm sure,
- 42:52saw the Ann and I MHD RFA
- 42:57on structural racism.
- 42:58We had some applications that
- 43:00were submitted to the NINDS,
- 43:02and those will be reviewed within
- 43:05the upcoming couple of weeks,
- 43:07and so we hope that those are successful.
- 43:10And I'm coming near the end of my talk again,
- 43:13just mentioning the Unite program.
- 43:16Go to the website,
- 43:17you'll see there are things that the
- 43:20NIH is doing for the NIH employees,
- 43:22but also for researchers and people
- 43:25in the extramural environment.
- 43:26Because it understands that this
- 43:30structural racism has is there.
- 43:32And if we don't do anything to address it,
- 43:35it will continue.
- 43:36And this impacts lives and
- 43:38impacts people in the workforce.
- 43:40And it also impacts the
- 43:41people working at the NIH,
- 43:43and so they're working to try to change this.
- 43:45These programs can be very
- 43:47important and helpful.
- 43:48I mentioned this that I myself I
- 43:51actually participated and benefited
- 43:53from some of these programs.
- 43:55Some of the CMI programs when
- 43:59I was an undergraduate school,
- 44:00I participated in the mark program,
- 44:02which actually got me interested in research.
- 44:04Back when I was a chemistry
- 44:06major in undergraduate school,
- 44:07but also it allowed me to
- 44:09participate in an MD PhD.
- 44:10MD, PhD program,
- 44:12which I did at Mary Medical College.
- 44:15These are some of the faculty
- 44:17members at that time.
- 44:19In ninety 1994 we were at some
- 44:22of the historically HBCU medical
- 44:24schools in the country.
- 44:26Dr Calvin Calhoun,
- 44:28who's actually one of the first African
- 44:31American neurologists in the United States,
- 44:34was one of my professors at Harry
- 44:37Medical College at that time,
- 44:39that could Patrick Griffith,
- 44:40who was that?
- 44:41Morehouse doctor we're at at Howard as well.
- 44:45I the four of us went to the
- 44:49American Academy Neurology annual
- 44:51conference in Washington DC that year.
- 44:54I actually went into neurology.
- 44:57This lady went into optomology.
- 45:00She was interested in Nuro optomology.
- 45:02Not sure.
- 45:02I'm trying to find out what feel
- 45:04that these two individuals went into,
- 45:06but this is at least 25 to 50%.
- 45:10Of the people of the four people
- 45:12from that time that this investment
- 45:14actually made a big difference.
- 45:16Though this has provided a platform
- 45:18for me to be able to continue to
- 45:22address these issues moving forward,
- 45:24I think that's and these are the
- 45:26people in my office who helped me to
- 45:28do the work. We're working to expand.
- 45:30We've been very busy recently,
- 45:32but I couldn't do this without them,
- 45:35and all the other volunteers
- 45:37and IDs that have helped me,
- 45:39so I think that's my last slide
- 45:40and I'm going to stop sharing.
- 45:42Now and open the floor up to
- 45:44questions that people may have.
- 45:46So I can see everyone again.
- 45:49Thank you very much Richard for the
- 45:52illuminating presentation and eye
- 45:55opening US statistics that you shared.
- 45:57Any questions or comments from anybody?
- 46:04I think there are a couple of in the chat.
- 46:07Yes, they will. Thank you.
- 46:08Someone can help me with the check.
- 46:11So Kevin shut that most of our
- 46:13stroke prevention trials in the
- 46:15past have enrolled patients with
- 46:17very mild or no disability,
- 46:19perhaps because of FP,
- 46:20and also maybe because of other biases
- 46:22based on NIH definition of diversity,
- 46:25should we do more to consider
- 46:26stroke patients with disability?
- 46:32That's that's an excellent question.
- 46:33I do think that, uh,
- 46:35that is something we do have to
- 46:37address that 'cause that is an area
- 46:39that we have not looked at a lot,
- 46:41and that that's a gap,
- 46:42and so that is something to consider.
- 46:43And we just have to sort of
- 46:45look at the markers of that.
- 46:47I know that for stroke,
- 46:49some of the trials,
- 46:50particularly the embolectomy trials
- 46:52they looked at people with the
- 46:55lower ranking scores and based upon
- 46:58small core and large penumbra.
- 47:01But there are studies now that
- 47:02are sort of looking at people
- 47:04with those higher ranking.
- 47:05And then I showed skill scores.
- 47:07But yeah, we need more.
- 47:08I think it's a.
- 47:09That's a good point.
- 47:10It's a it is a gap area and
- 47:13something we should look at.
- 47:15Thank
- 47:15you second question.
- 47:16This has been an eye opening talk.
- 47:18Thank you from Adam to Adam and
- 47:21the 5% funded rate Ferraro ones in
- 47:23underrepresented groups is very troubling.
- 47:26The NOSI mechanism and the others
- 47:27you describe seem like terrific ideas
- 47:29with these changes and the focus on
- 47:31career development, what do you think?
- 47:33Slash hope they are.
- 47:34One rate will be in five to 10 years.
- 47:39Great question. UM, we we'd like to see
- 47:43that the we like to see that we see
- 47:47good representation of funding rate.
- 47:51Similar to to what we see for
- 47:54other categories that we see for
- 47:56whites and other groups as well.
- 47:58Proportionately, we like to
- 48:00see those same proportions.
- 48:01The difficulty that we have
- 48:04is that this type of.
- 48:06Quote unquote race ethnic
- 48:08distinction is self reported and
- 48:10it's sometimes difficult to ask.
- 48:13We can't require people
- 48:14to give that information,
- 48:15and so oftentimes we don't know and
- 48:17and some people may not want to give
- 48:20that information for various reasons,
- 48:21and so we actually the open office
- 48:23had to work very hard and sort
- 48:26of thing strategically to come
- 48:27up with the no see in a way of
- 48:30trying to flag or identify people
- 48:32who fall into that category,
- 48:34'cause oftentimes people will just sort of.
- 48:37Fall through the cracks and so it
- 48:40it you know the way I presented it,
- 48:42it seems like you know you think wow
- 48:44yeah it's a no brainer but actually
- 48:46it's something that required a lot of
- 48:48thought to be able to pull that together.
- 48:54Another question from Elizabeth Perlstein,
- 48:56does this scope include the deaf community?
- 49:03Yes, that that would, uh, in terms of the,
- 49:07UM, individuals with disabilities.
- 49:09It would include that as well. Yes it will.
- 49:14Richard, this is Mark Alberts we were working
- 49:17with some outside consultants to
- 49:20address some of these issues and they
- 49:23brought up a very good point and it shows
- 49:26how simple things can make a difference.
- 49:28Me like you and a lot of folks on this call.
- 49:32We're in meeting after meeting day
- 49:34after day and we're always looking
- 49:36at data and various patient groups.
- 49:38And with these consultants said or
- 49:41suggested as well. When you look at.
- 49:44Your groups of patients for any
- 49:47disease for any disorder you know.
- 49:49Being inpatient, outpatient,
- 49:50whatever it is, do you breakdown
- 49:53the data by different groups?
- 49:55Gender, black,
- 49:57white socioeconomic and we don't.
- 50:00We don't routinely look at
- 50:02the data through that prism.
- 50:03We look at large groups with large numbers,
- 50:06and we sort of aggregate the data,
- 50:08which makes sense at one level.
- 50:10Instead of looking at subgroups of
- 50:12patients to really see it through lens.
- 50:15Of inclusiveness and diversity,
- 50:19and that was really an eye opening
- 50:22remark that they shared with us,
- 50:25and I was wondering if
- 50:26that resonates with you,
- 50:27and if NINDS is sort of used
- 50:29to doing that when you look at
- 50:32large groups for whatever reason,
- 50:34or if you're changing,
- 50:36or if that observation has any impact.
- 50:41No thanks mark. No, it's a great point.
- 50:43Actually, I've been working with.
- 50:45There's a health disparities group
- 50:47through the American Academy of Neurology
- 50:49and we're actually looking at the Axon
- 50:51registry and we're trying to look at that,
- 50:53which is a registry.
- 50:55Outpatient data doesn't include stroke
- 50:57right now, so so most of you were stroke
- 51:00programs aren't including that information,
- 51:03but we're looking at that data.
- 51:04Just sort of see how neurology is
- 51:07actually practice on an outpatient
- 51:09basis across the country. And so we.
- 51:11Tried to look at that and race ethnic data.
- 51:13We found several things.
- 51:15One, we found that that we're not good at
- 51:18collecting race ethnic data and actually
- 51:20it's only about you know 50% of the
- 51:23information that it actually captured.
- 51:24People confused race and ethnicity
- 51:27they would put in ethnicity for race
- 51:31and it was usually black white.
- 51:36And then Asian Hispanic,
- 51:38which is an ethnicity people get
- 51:40confused when you you think about that.
- 51:43And so when you start to look
- 51:45at the different types of Asian
- 51:47groups or Hispanic groups,
- 51:48then it starts to totally fall off.
- 51:50And so there was a so that
- 51:53that's a great point.
- 51:54Part of it is because of EHR
- 51:56systems and clinical practice.
- 51:58We don't have good ways of collecting
- 51:59this data, which is part of it.
- 52:02The other part.
- 52:03A lot of times we will group smaller,
- 52:05smaller.
- 52:06Ethnic groups NHLBI funded a workshop
- 52:09where they focused on Asian Americans,
- 52:13Pacific Islanders,
- 52:14and Native Hawaiians,
- 52:17and they talked about if you
- 52:18put those groups together,
- 52:20you would think that all of them
- 52:22do much better or have lower
- 52:23mortality rates than most people.
- 52:25But they said it's not true that
- 52:27you have to look specifically
- 52:28and disaggregate those groups in
- 52:30order to really see differences,
- 52:32and so by lumping people together
- 52:33you can get false positives or
- 52:35negatives putting people together.
- 52:37And we have to do better in
- 52:39clinical care and also in research
- 52:41in order to categorize people
- 52:42and to keep this information.
- 52:44And if we don't collect this information
- 52:46then we won't be able to go in and
- 52:48see that there are disparities
- 52:49and how medicine is practiced.
- 52:51And so you actually touched on
- 52:53a very important point Mark.
- 52:55We have to do better in terms of
- 52:57not lumping everybody together
- 52:58and categorizing people,
- 52:59but then that that forces us to
- 53:02deal with the uncomfortability
- 53:03that people have with asking
- 53:06race and ethnicity questions.
- 53:08And not just sort of defining
- 53:10people based upon what we think
- 53:12they are based on how they look,
- 53:13but to actually ask people how do
- 53:16they define themselves with probably
- 53:17the most important way to look at it.
- 53:20That's a great question.
- 53:21Thank you.
- 53:23More question in the chat by
- 53:25Tracy Madsen given ongoing
- 53:26disparities in stroke mortality,
- 53:28how does funding for surveillance
- 53:30studies evaluating ongoing race based
- 53:32disparities fit into the NMDS mission?
- 53:36Well, uh, one thing that, uh,
- 53:38yeah we know that the disparities exist,
- 53:41UM, so uh, what a doctor khorshed
- 53:43States and so we've highlighted this in
- 53:46written multiple times is that we don't
- 53:49want to continue to admire the problem.
- 53:52I mean, we know that it's there and so
- 53:54just continuing to look at the problem just
- 53:57for the sake of looking at the problem
- 54:00or defining the problem in new ways.
- 54:03That's not of interest,
- 54:04but if it's a matter of.
- 54:06Looking at a new disparity or looking
- 54:09surveilling something after an
- 54:10intervention has been implemented
- 54:12then that's a different issue.
- 54:14So if you're doing surveillance
- 54:16after an intervention,
- 54:17I think that's important in terms of
- 54:19looking to see if the numbers change
- 54:21after the intervention or if it's a
- 54:23new area that's just being looked at,
- 54:25then I think that would be important,
- 54:26but we really would like to move
- 54:29towards intervening on those problems
- 54:30that we know that are out there.
- 54:37I had a question from
- 54:39being struck neurologist.
- 54:40Some hypertension is something
- 54:42we pay close attention to.
- 54:45You mentioned that despite the
- 54:47science at there there has been there
- 54:49have been barriers to implementing
- 54:52good blood pressure control and
- 54:54underrepresented communities.
- 54:56It was wondering if you might
- 54:57elaborate on what some of these
- 54:59barriers might be in your experience.
- 55:01Yeah, so this is a really big area
- 55:04and it's something that we're working
- 55:07on and hopefully love to fund more
- 55:09research in this area as well.
- 55:12We know that you know,
- 55:13addressing some of the social determinants
- 55:15of health are very important,
- 55:17and insurance status competing needs.
- 55:21If someone it's an issue of putting
- 55:26gas in the car to go to work,
- 55:28paying for daycare, paying for groceries.
- 55:31You know paying for books,
- 55:33paying for something for school versus
- 55:35paying for blood pressure medication
- 55:38so individuals have competing needs,
- 55:40and so oftentimes people.
- 55:41Those that actually have insurance and
- 55:44know they have high blood pressure
- 55:45and may need their medication may not
- 55:47take their medication because they
- 55:49have other competing needs or they
- 55:51have to stretch out their medication.
- 55:53I've often times when it was back working
- 55:56in the hospital, people would say, well,
- 55:59I take my medication every other day.
- 56:01I was getting low and so I started
- 56:03stretching.
- 56:03Get out and so they stretch out the peels.
- 56:05That's part of it.
- 56:06Mental health is very big.
- 56:08There are a lot of people who have
- 56:10mental issues that are not addressed.
- 56:12Depression is is really big,
- 56:14and so people don't address that.
- 56:17And then there are food deserts.
- 56:18There's a lot of data about the
- 56:20benefit of fresh fruits and vegetables,
- 56:23and so you know it.
- 56:26A lot of people.
- 56:28Go to McDonald's 'cause it's cheap
- 56:30and it's in the neighborhood.
- 56:32I was, uh,
- 56:33you know,
- 56:34taking care of a friends child
- 56:38recently and the kid was eleven
- 56:40and wanted to go to McDonald's.
- 56:41I would think to myself,
- 56:42Oh my goodness, make that.
- 56:43I have not been to a McDonald's
- 56:45since I don't know when,
- 56:46but the kid wanted McDonald's
- 56:47and so I took him to McDonald's.
- 56:49But I did in my mind I'm thinking
- 56:51the whole time I can't believe I'm
- 56:52taking this kid to McDonald's.
- 56:54But I mean that that's a meal for
- 56:56a lot of kids to go to McDonald's
- 56:58to eat and they don't have to have
- 57:01little corner bodegas.
- 57:03So they can't get fresh fruits
- 57:05and vegetables,
- 57:05and they're eating out of a cannon
- 57:07or chips and all of that kind
- 57:10of stuff has high salty foods,
- 57:12and so I think those kinds of
- 57:14things have to be addressed.
- 57:15And in terms of, you know,
- 57:18those other social determinants of
- 57:19health that are out there in order to
- 57:21get the blood pressure under control.
- 57:23'cause people when you look at the
- 57:26knowledge in terms of of of hypertension.
- 57:28For I don't know we're getting near
- 57:30the end of time of why it's blacks
- 57:32and other groups blacks actually.
- 57:34Have, UM,
- 57:34just as much knowledge or awareness
- 57:36of having high blood pressures,
- 57:39other groups,
- 57:39but it's all these other factors
- 57:41that sort of come into play in terms
- 57:43of getting people under control.
- 57:45And so we have to address those issues.
- 57:48You're
- 57:48helpful, thank you.
- 57:55Thank you so much. Alright, thank you.
- 58:01So we are on break for the next half
- 58:03an hour. Please join us back at
- 58:05noon for a talk by Doctor Broderick.