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Richard Benson - NIH Health Equity Strategic Planning

October 27, 2021
  • 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.