2017 Public Health Ethics Forum


>>Good morning and welcome
to the 2017 CDC OMHHE Office of Minority Health and Health
Equity in collaboration with the National Center
for Bioethics and Research and Healthcare at Tuskegee
University’s third annual Public Health Ethics Forum. This year’s focus is
on Women’s Health. And the theme is Optimal
Health for Her Whole Life. My name is Shonia Zollicoffer, and I will serve as the Mistress
of Ceremonies for today. Today’s forum is
also streaming live. And for those attending
virtually, please submit all questions
and comments to [email protected] We will have that
slide back up for you. Again, that email
is [email protected] So, today we have a very,
very robust schedule. So let us get started. So allow me to introduce to you our first speakers which are Drs. Liburd and Tucker. So Dr. Leandris Liburd is
the Director of the Office of Minority Health and Health Equity here at Centers for Disease Control
and Prevention. In this role,
Dr. Liburd oversees the work of CDC’s Office of
Women’s Health, Diversity and Inclusion Management and Minority Health
and Health Equity. She is a respected public health
leader, who has over the course of her career championed
community health promotion, chronic disease prevention,
community engagement, eliminating health disparities, and addressing the social
determinants of health. She has worked in public
health at the local, state, and federal levels,
and has held a variety of leadership positions at CDC since joining the
agency in 1987. And our second speaker,
Dr. Patty Tucker is the Director of CDC’s Office of
Women’s Health. Dr. Tucker’s career spans from
clinician for women and children to consultant on evidence and practice-based
strategies designed to promote healthy lifestyles and disease prevention
domestically and internationally. Dr. Tucker has worked with the Center for Infectious Diseases in Zambia, Namibia Ministry of Health and Social
Services National HIV Sentinel Serosurveillance study
of pregnant women, and in Sierra Leone to
assist in the Ebola outbreak. So, to begin, Dr. Liburd. [ Applause ]>>Thank you Shonia and
good morning everyone. Good morning to all of
the — the early risers. We really appreciate
your being here at eight o’clock this morning. I know for some it was a
sacrifice, but we wanted — We were so excited about
today, we just wanted to get started early and we know
that people will be leaving. It’s Friday. They have flights and so forth,
but I want to add my welcome to Shonia’s welcome to this
year’s Public Health Ethics Forum that is dedicated
to the thoughtful and ethical consideration
of a range of health issues that affect women and
girls across the lifespan. Women make up just over
half of the U.S. population, and they are present
in every sector. At home, they are organizing
communities, raising children and grandchildren, leading
foundations, national and global organizations
and universities, and ensuring the implementation
of sound public health policy and practice among other things. This year’s forum
will delve deeply into selective public
health issues that in some instances
disproportionately impact women. And we will explore
how we can be better at improving health
outcomes for women and girls from preconception to old age. Today, you will hear from
women and men, just a few, who are nationally recognized
for their work as scholars, as practitioners,
ethicists and researchers. Our goal is to inspire lively
and focused conversations about ethical issues we
need to be aware of in order to deliver effective and
inclusive public health programs that benefit women over the
course of their entire lives. I want to take a minute of time
to thank all of our partners and the planning committee. I’d like to thank Dr. Reuben
Warren, Professor and Director of the National Center
for Bioethics and Research and Healthcare at Tuskegee
University for his commitment to the ethical practice
of public health and the relationship
that has been established between our respective programs. Many thanks also go to
Jo Valentine and the Division of Sexually Transmitted Diseases
for bringing us all together to expand the breadth of
the cooperative agreement between Tuskegee
University and CDC. I also want to offer
congratulations on the 20th Anniversary of
the Presidential Apology for the Tuskegee Syphilis Study
and also to congratulate — [ Applause ] And I also want to congratulate
the Division of STDs on their Public Health
Ethics Internship Program. I’d like to thank
Dr. Drue Barrett and the Public Health
Ethics Office here at CDC and Dr. Patty Tucker,Director of CDC’s Office of Women’s Health. And I’d like to thank and ask to stand this year’s
planning committee, Shonia Zollicoffer,
Gwen Baker — [ Applause ] — Laura Ross, Gwen that’s in
the back, Dr. Joan Harrell — [ Applause ] — Benita Harris-McBride who is
off celebrating the graduation of her son and Jenny Kinkaid. Where is Jenny? Thank you. [ Applause ] There are also many others in
the Office of Minority Health and Health Equity in the
Global Communication Center and colleagues near and far who have made today’s
forum possible. And we extend our heartfelt
gratitude to each of you. Susan B. Anthony who was
well-known suffragist and abolitionist, once said,
“Wherever women gather together, failure is impossible.” So we begin the forum knowing that it is impossible
for us to fail. Thank you so much for
being here for those of us who are joining us virtually. And I look forward to
the remainder of the day. Thank you. [ Applause ]>>Good morning. It gives me great
pleasure to extend to you a very warm
welcome on behalf of CDC’s Office of
Women’s Health. We are glad to have you here
coming from near and far to attend the 2017 Public
Health Ethics Forum. Sunday, May 14th was Mother’s
Day, and that’s the first day of the National Women’s Health
Week, which is celebrated through May 20th
through tomorrow. Since 1999, the USC
Department of Health and Human Services Office of Women’s Health has observed
National Women’s Health Week. During this time,
women are encouraged to make their health a
priority and to take steps to improve their health. This year, during National
Women’s Health Week, CDC’s Office of Women’s Health
has coordinated the planning and the implementation of the Public Health
Ethics Forum Optimal Health for Her While Life. In promoting and protected —
It is promoting and protecting from birth to older adulthood
the health of women and girls. Optimal Health is as state of
a complete physical, mental, spiritual and social well-being
and not just the absence of disease or illness. Optimal Health for
Her Whole Life begins with comprehensive prenatal care
for women in all communities, continual quality
health care for all ages, promotion of individual
characteristics and behavior or environmental conditions
that reduce the effects of stressful life events,
financial literacy, attaining higher levels of
education, economic security, ending the cycle of violence, preparing for retirement
and the list goes on. Here in the CDC Office
of Women’s Health, our goal is support and protect
the health and safety of women and girls by addressing
health issues and identifying solutions. We hope today’s forum
is the beginning of a stimulating dialogue and
opportunities to exchange ideas and views and create across
multicultural collaborations. And through this exchange,
ethical issues are identified, and potential solutions or
actions are put into practice for an impact on the
well-being of women and girls across the nation. In closing, I ask that may we — I hope that we all gain
something of relevance from this day and time
that we spend together at the 2017 Public
Health Ethics Forum. Thank you. [ Applause ]>>Thank you Dr. Liburd
and Dr. Tucker. So moving right along, our next
speaker is Dr. Patricia Simone. Dr. Simone is acting CDC
Principle Deputy Director. Dr. Simone has served as
Principle Deputy Director of the Center for Global Health
and the Director of the Division of Public Health Systems
and Workforce Development. There, she provided leadership
in building Ministries of Health capacity
internationally through the Field
Epidemiology Training Program and the Sustainable
Management Development Program. Dr. Simone is a retired captain of the United States Public
Health Service Commission Corps. Please join me in
welcoming Dr. Simone. [ Applause ]>>Good morning everyone.>>Good morning.>>I’d like to add my welcome to
all of you to this forum today. I’m really happy to
be here in my role as Acting Principle
Deputy Director. I get the — have the great
pleasure of getting work with Dr. Liburd and her
team and learn a lot more about the activities
of the office. And it sort of brings
me back in early 2000s, I worked in the National
Center for HIV and STD Prevention before the
— the hepatitis part was added. And I got to work with
the Tuskegee Program and the Minority
Health Programs there. So, it’s really great to
be joined with this types of activities once again. I want to thank the —
all of you for being here and thank the — the speakers
that have come before me. So I have a few words for you
today about CDC and this work. CDC has earned the
reputation of being one of the most trusted
federal agencies. And the way we’re able to
maintain a public’s trust is by ensuring that we
engage in high quality, scientifically sound and
ethical public health practice, surveillance and research. Public health ethics is the
process to clarify, prioritize and justify possible course of
action of public health action. This process must be
based on three things: Ethical principles, the values
and beliefs of the stakeholders and on scientific information. While CDC excels at gathering
scientific information, gathering is not enough. We must act on this information
guided by the principles of good public health practice. Dr. Liburd talked to us
today a little bit already about the work of the
Division of STD Prevention and the Tuskegee University. This collaboration is
really important one. And in 2015, part of that
collaboration was starting these ethics forum — forum. And these forums have
highlighted public health issues related to African-American
health, Hispanic health data and this year, women’s
health across the lifespan. These four are an important
way for us to come together as partners to advance
health equity. CDC is committed to working
with diverse populations and creating opportunities
to better reach communities that may be underserved and whose voices often
don’t have a chance to hear. I’m also pleased to recognize
the CDC’s Office of Women Health in coordinating today’s forum. They are shining a light
on the public health issues that in many instances
disproportionately impact women and girls who make up more than
half of the nation’s population. We already have excellent
examples of this important work and I’d like to mention two o
of those: First, heart disease. Heart disease kills
one in five US women. American — It’s the American
women’s leading cause of death, and yet is often thought
of as a man’s disease. CDC’s Wise Woman
Program, not just — aims not just to help
women understand their risk of heart disease,
but provides services to promote heart
healthy lifestyles. It targets low income,
under-insured and uninsured women,
age 40 to 64 years. It provides heart disease and
stroke risk factors screenings and services that
promote healthy behaviors. And the currently consists
of 21 programs in 19 states and two tribal organizations
and is administered through CDC’s Division of Heart
Disease and Stroke Prevention. Another example is
gynecological cancer. Each year 89,000 US
women are diagnosed with gynecological cancer. A teacher named Johanna
Silver-Gordon died in 2000 of ovarian cancer at age 58. She had all the symptoms
but did not recognize them for what they were. The Gynecological Cancer and Education Awareness
Act is named Johanna’s Law in her honor. To support Johanna’s Law,
the CDC in collaboration with the HHS Office of Women’s
Health developed the campaign Inside Knowledge — Get the
Facts about Gynecologic Cancer. This educates women and
healthcare providers about the signs,
symptoms, risk factors and prevention strategies
related to cervical, ovarian, uterine, vaginal
and vulvar cancers. And it encourages women to
pay attention to their bodies and know what is normal for them so that they may recognize
any persistent symptoms and seek appropriate
and timely care. Programs like these are saving
the lives of our mother, our daughters and our sisters. We are hopeful that today’s
Public Health Ethics Forum will result in the greater awareness of the ethical challenges
associated with promoting and protecting women’s
health, the formation of new relationships among
persons attending the forum and a greater knowledge
to inform all of our work to improve the health
of women and girls. On behalf of the Acting Director
of CDC, Dr. Anne Schuchat and the senior leadership of
CDC, we want to thank Dr. Warren and his colleagues the
National Center for Bioethics and Research and Healthcare
at Tuskegee University, all of our guest
speakers and facilitators and subject matter experts, the participating National
Centers Institutes and Offices and all of you for taking time
away from your other commitments to be part of this year’s forum. Thank you very much. [ Applause ]>>Thank you Dr. Simone. So next, we have very
lively speaker for you. I’m very excited to introduce,
Dr. Reuben Warren. Dr. Warren is Professor and
Director the National Center for Bioethics In
Research and Health Care at Tuskegee University, as
well as the Adjunct Professor of Public Health, Medicine
and Ethics & Director of the Institute for
Faith-Health Leadership at the Interdenominational
Theological Center here in Atlanta, Georgia. Prior to this, Dr. Warren
served as Associate Director for Minority Health
here at the Centers for Disease Control
and Prevention. He also served as the Associate
Director for Urban Affairs, as well as the Associate
Director for Environmental Justice at
the Agency for Toxic Substances and Disease Registry
here at CDC. His extensive public health
experience at community, state, local national and international
levels range from clinical and research work at Lagos
University Teaching Hospital in Lagos, Nigeria to heading the
Public Health Dentistry Program at the Mississippi State
Department of Health. Please join me in
welcoming Dr. Warren. [ Applause ]>>Good morning.>>A couple of don’t do’s. Don’t stop by Starbucks
and get tea or coffee, because you may spill it on
your coat, and you won’t be able to wear it when you
introduce our speaker. I’m one of the few men that
has the opportunity to speak with you today, and I
am so very, very pleased and proud, one of the few men. I’m on the planning
committee that worked to make this day possible. And our first meeting about when
we decided to do women’s health, I said very clearly,
“I will argue my point, but y’all make the decision.” And in most instances,
I argued my point, and they made the decision. It was different than my point. It helped me to learn
that I have a lens, but that lens is limited. So I want you to know,
your limited lens as well. It may be around
race and ethnicity. It may be around gender and sex. It may be around income. And as I’ve learned
being in Tuskegee, it may be around
geographical locale. I grew up in inner city
South Central Los Angeles, urban America. Tuskegee is not urban America. I’ve learned a lot
from being in Tuskegee. This forum is critically
important from my perspective because it does a
couple of things. It expands and continues an
authentic, ethical relationship that has evolved into a true
and authentic partnership. And there is difference, and I’m
intentional about using the word “ethics” because that’s the
basis of why we’re here today. And it simply means doing
not the right thing only, not doing things right, as
science drives that agenda, but doing those things
through the — the lens of those who see
it differently than you. And understand those who have
the most to lose have the most to gain, and we ought
to listen carefully to what they have to say. This forum started in
2015 as you’ve heard because we reflected on
100 years since the death of Booker T. Washington, the
Founding Principal and President of Tuskegee University,
then Tuskegee Institute. Booker T. Washington had a lens
that was not an unusual lens. It was one that looked at the
whole picture at all of us and focused on those in
greatest need at that time. And that sounds like
public health to me. He found through the work
of some of his colleagues, Monroe Work, a statistician
in particular that the health of black people was terribly, terribly different
than that of others. And that difference
was bad, very bad. He found that the causes —
the preventable causes of death for African-Americans were
preventable, cost a lot of money and cost a lot of lives. So he established in
1915 Negro Health Week. And what many didn’t know,
and we reminded them in 2015 that that evolved into
Minority Health Month, National Minority Health Month. So when you think you’re
starting something new, stop, look back so that
you can look forward. Negro Health Week is now
Minority Health Month. Thank you BTW. The lens — the lens of
ethics has many spheres. And as many of came through
looking at understanding and trying to adhere
to bioethics, a very, very important paradigm
evolved out of ethics, evolved out of philosophy
some would say. A little bit of argue
evolved out of theology. But you know, we won’t
argue that point. Where are we today? Public Health Ethics, a
different kind of lens, one that we all think we know about because we all think
we do the right thing. But it is a basis for how we
should act in public health, public health ethics,
here and now. Not only the intention
to do good, but doing good in and of itself. Lowly, honoring and
respecting autonomy but seriously engaging
community, not only in justice, but in social justice. And in my view, social justice and public health
are one in the same. Doing things right, the
importance of science. Doing the right things,
the importance of ethics. Doing the right thing for
all of us is the charge of public health ethics. So we’re going to move on
today and understanding that we all are vulnerable. Every last one of us
has a vulnerability, rather you know it or not. But some of us are more
vulnerable than others. I would argue those are those
susceptible populations. Those who are most
vulnerable are those who we should spend our greatest
resource and most attention to. Know your vulnerability
and look around and you’ll find somebody else
with a different vulnerability. Help them and in fact,
they will help you. We’re in this together
whether we like it or not. So when you win, I win. And quite frankly,
when you lose, I lose. We’re in this together. This forum particularly looks
at women and their whole life, girls in their whole life. And every time I listen to my
granddaughter, I learn something about women in their whole life. This is an exciting day and I’m
so very, very pleased to be here and to see that you’re here. Thank you for being here,
and we will have a good day. Thank you. [ Applause ] I would like to introduce, no,
present a friend and colleague. Because if you know anything
about women’s health, no matter how little
you might know, to introduce our keynote
speaker this morning to you, would be an insult to you
and more importantly to her. So I want you to take a moment
this morning and listen. I’ve been in school for a
long time, long, long time. I’m a slow learner, so I
stayed there a long time. And I didn’t learn
much about listening. I learned a lot about
talking, not listening. So I want you to listen this
morning, because in 1970, early 70s, while in Boston, I was talking, teaching
and talking. And somebody told me to listen. As I did, I heard the name,
Vivian Pinn, this physician at Tufts, that was finely
motivating, inspiring, and guiding students,
mostly medical students, mostly black students,
but others in Boston. And you know in Boston, if you
think you have something going, you take it to Boston. So I listened, heard
the name Vivian Pinn and how wonderfully she
was doing with students. And when I joined CDC in
the, like, late 80s/90s, I met some of those students
were here running CDC because they listened. And Boston I listened and
heard the name, Vivian Pinn. Years later, and I wandered
around Harvard University, and I heard the name again, Vivian Pinn because
I was listening. I went there to talk
but I had to listen, and heard the name Vivian
Pinn chairing the Department of Pathology, chairing the
Department of Pathology, Board Certified Pathologist. I was listening and
heard wonderful things about leadership in it around Howard University
School of Medicine. I was listening. I want you to listen
this morning. And then I, as you heard, I
worked a while here at CDC and, we were trying to work with
all the federal agencies and all the — everybody else who thought they had
something to contribute. And I heard the word
about the need for office of Women’s Health. Heard it first here
at CDC and my response because I was working minority
health say, when women’s health and minority health
is different, so don’t ask me to do it. I — I don’t know how to do it. So I asked not to do it, and then it became an
Office of Women’s Health. And then as I listening
going through the agencies, I heard about an
office or research on women’s health at NIH. I said, “Now who
would have the courage and the nerve to do that?” And as I listened, I
heard the name again. You know what name that was? Vivian Pinn. So, everywhere I went and
listened on strategies to improve the health of
those most vulnerable, the susceptible and I listened. I heard the name Vivian Pinn. So when I decided to go down in
the country, Tuskegee, I said, no, I won’t hear that name. But then I say well I’m going to
introduce Dr. Pinn to Tuskegee, and I was embarrassed. Well she said, well, if I come,
I need to stop by the graveyard to give my respects to some of
my kinfolk not in the country, the name again, Vivian Pinn. So I want you to be real
intentional this morning about listening, not
talking, but listening. And I’m sure you’ll hear
something you haven’t heard before and much that
you have heard before if you listen to
Dr. Vivian Pinn. Let’s welcome her to the stage. [ Applause ]>>Thank you, alright. When I — she invited me
to come into government, thinking about giving up a
tenured full professorship and a department chair in
Academic Medicine to go to government, I said, “No
thank you Dr. Healey because I like to say what I think
and I don’t think I’ll last in government that way.” I literally, literally
said that to her. And her response was
she does — she did too. Why don’t I come and try it? So in fact, that was
how I started NIH. So, I’m pleased to be here
and pleased to be able to with what time I haven’t
lost already screwing up this presentation. But, to be able to
talk about the topic which is Optimal Health
for Her Whole Life, which to me is really
referring to lifespan issues. And I often think when we
talk about women’s health, the label we gave, and over
the years, really thought — we really misnamed this because
we really should’ve called it The Health of Girls and
Women to really reflect that lifespan issue instead
of just women’s health. But that’s alright, we’ll
make up for that as we talk about the continuum of health. And this is very timely
because it is National Women’s Health Week. So from the standpoint
of I know the perspective of the bioethics Center, and for
those of you in the room looking in the terminology and
relative to ethics, justice and inclusivity that National
Women’s Health Week is a wonderful time right on topic
to look at the issues related to women’s health or the
health of girls and women. Now, I can say and I’m
sure there are many in this room who’ve
been involved in women’s health
for many years. And Marsha, I’m going to
call on you in a minute. But I’ll get to you
in a little bit. That’s doctor — that’s not
doctor, but Marsha Henderson who is the Director of the
Office of Women’s Health at the Food and Drug
Administration, before that, held many positions and has been
with that office for many years and has really been a
wonderful colleague. I probably now don’t
get her in trouble since I’ve been retired
for six years. So, she’s on her own
and she can behave without me steering her on,
but has been a great champion. If you don’t know
Marsha, stand up Marsha so they will know who you are. [ Applause ] But many in this
room I know have — and we’re well aware that how
we define and what we think about women’s health, how
women’s health or the health of girls and women really has
changed since the late 1980s and especially since about 1990. And that came about
because of advocacy combined with scientific legislative
public policy and human rights considerations. And it really is important to
reflect on that because it shows that when you have concerns, that actually it was
grassroots efforts that led to eventually a change in
public law for this country. And so we can bring about change
if one is dedicated enough to what we are trying or
one is concerned about. So what was the historical view? We talk a lot about
the traditional view of women’s health. And actually I — because I
didn’t want to have 1500 slides, didn’t put them in,
but there are textbooks and there are many documents
from the 80s and 90s. And I go back and look. I finished medical
school, I hate to say it, but I finished medical
school in the 60s. And looking at the textbooks
that we used at that time, and women’s health was
defined really in terms of reproductive health. Women’s well-being was defined
in terms of her sexuality. Women’s health was
really considered to be the reproductive system
during the reproductive years. If you ask what was
men’s health, it was the total body
system everything from head to toe, all of the systems. You ask, what was
women’s health? They send you to OB/GYN
because it had to do with reproductive
health with pregnancy. Almost nothing related to
women’s health after menopause. It was as though once
you hit menopause, reproductive years are over,
you just sat in a rocking chair on the front porch and
you rocked and that was it until you passed away,
as opposed to looking at healthy aging, etcetera. So, doctor — I think Marianne
— many people have claimed it, but as I look back, I think
it was Marianne Legato, who first gave the
label, The Bikini View of Women’s Health to that idea. Well, we’ve made some changes,
and one of the first things that we had to do at NIH when
we began to study women’s health and to really look at it from
the standpoint of research, which very important is two
things: One, to recognize that women are not the same as
men because this whole concept of attention to women’s health,
really came about because of the concern to
whether not standards of medical practice were being
based on information that came from the study of women or where
the studies of health issues in men aside from
reproductive issues done in men, were being applied to women as though women were
just little men. And obviously that’s given
rise to the whole field of sex and gender-based medicine
and policy if you will — but also recognizing that
women’s health didn’t begin at puberty and end at menopause, but that it really
encompasses the entire lifespan. And so we had two things to do
— One, to bring up the concept of comparing women
with men and secondly, to look at the expanded concepts
of women’s health and not just from birth to grave, which is
what some like to refer to. But as we talked about
sex and gender differences and obviously based upon many
things I had been involved in and the fact that I was
heading this office, we could not just look at
women in terms of the fact that women are not
just like men. But the fact also that not
all women are the same, that there are differences
between different populations of women, and it may not
have been popular in 1991, but one of the first things
our office did was to declare that as we look at
women’s health, there would be two aspects:
One, to look for differences between males and females
and secondly to look for those factors
that contribute to differences among
different populations of women or different populations of
men, which to me is a way to — to explain why there
are health inequalities, why there are health
disparities. And looking at those factors
across the lifespan if you will, not just in terms of health
status, but health outcomes. How do we respond differently
in response it interventions and responses to the
environment in which we live, which we were born,
in which we grow up? How do we respond
different to treatments? And that really —
this slide really kind of summarizes the essence
of what I really worked for and how I constructed programs
during the 20 plus years I was at the Office of Research
and Women’s Health at NIH. If you didn’t know, Dr. Warren
didn’t tell you, I’m supposed to retire in two
months as of six years, and you would not know
it from my schedule. But anyway, I am
supposed to retire and I have flunked retirement,
but that’s another story. But looking at health
disparities and health inequalities, and
I must say that CDC has a lot of wonderful information
really coming out of the Office of Minority Health and the
— the other and the other and other parts of CDC with good
literature and good explanation about health disparities
and health inequalities, which I often quote
when I’m speaking about health disparities. But we all know what
health disparities are. But I — I had this — this —
this slide that I often use, but I added the section, Gender
Equity is a Social Determinant of Health, because as we
talk about those determined, those factors that —
that contribute to health and that contribute
to health disparities, I just — On, what was it? Wednesday, two days ago, I
can’t keep up with the NIH, where they have a
lectureship for women’s health. And it was interesting
because one of the speakers made
a big point of looking at social determinants
of health and emphasizing that gender equity — gender equity is a social
determinant of health. And I think I’ve
been implying that, but I like the way
she emphasizes, so I added that to my slide to
make that point because we know that the Center for Bioethics
is focused on and wants us to consider social justice
and — and — and — and social justice,
and to me, that — that brings that forward. And as we look at what’s
happening in terms of looking at different populations
of women, we know that there
are differences in health status/health
outcomes, access to care, and that term which
we need to now reframe in the current sociopolitical
environment, really differences in that if we’re going
to make a difference and overcome these differences, we need to know what
we need to overcome. Anecdotes don’t work. To me, that is the
value of research that we have the evidence
so that we know what we need to tackle, what are leading to? What is resulting in
these health disparities at different points
of the lives of women and different populations
of women. So, when I went to
NIH and many asked, “Why did you leave Academic
Medicine to go to NIH and become a federocrat,
if you will?” It was because having been
out there like with Dr. Warren and many venues we’ve been
in, knowing we were trying to make a difference in what
was happening for health of our people and our
communities, as well as people in general, knowing that
anecdotes were not working, that we really need to have the
information based on the fact that there now is
going to be an office that would be focusing
specifically on getting the data and — and what we have as the evidence-based
system of medicine. And in order to change
standards of health practice, in order to change
what is taught in health profession schools
in order to change what women and their families are told
about preserving their health, we don’t need stories
that are carried over. We need evidence. We need information. So research is important,
and having that information from research, then having those
— that information incorporated into healthcare, as well as into
public policy can then help us to change and require
some changes and standards of healthcare delivery, as well
as know what to inform women and men and their families
about what they can do to preserve their own health. So, I mention this and I’m not
giving a lecture on inclusion, but it’s important because
this is what came about. And actually, I have to give
a lot of credit to Dr. Warren because the center at Tuskegee
has really focused so much over the years and continues to
on the importance of inclusion and clinical research of
women and minorities in — in generating results and
actually has had several number of symposia dealing on — dealing on the issues of
inclusion, and I think — Well, even, I know
that you’re working on a project on that now, but I wanted
to just emphasize this. If you think about it, actually
the actual change came about out of the Women’s Health Movement, because it was the
Women’s Health Movement that actually went
to Congress and said, NIH is not including
women in clinical studies. We need to make sure they’re
going to do that, and a policy for the inclusion of
women was developed. But then there was
some who said, well what about minorities, which was the terminology
used then. And so, then the NIH guide said, well let’s add the
word “urging.” So after inclusion, then —
then — then there was a — Language was added that said
we encouraged the inclusion of minorities in clinical
research at the NIH. And then the general
accounting office at the request of Congress, looked to see whether NIH was following
these guidelines, and were women and minorities being included. Focus was primarily on women,
but it also looked at whether or not women were
being included, and it was actually
NHLBI, the National Heart, Lung and Blood Institute that
seemed to be doing the best at that time in 1990 in
ensuring that women — that members of minority
communities were being studied. But when that report came out
saying NIH was not doing it, it was a press conference held
on NIH’s campus to lambast NIH for not making sure
that women were included in clinical studies that led to the then Director/Acting
Director of NIH to announce we’re
setting up an office to make sure this happens. And that was what the
genesis was for the Office of Research on Women’s Health. It really was established
to respond to concerns about the inclusion of women. You can’t separate
women and minorities. And although there was an office
of minority health programs at that time, you can’t separate and have two different
sets of data. So actually we ended up doing — looking at most of the
issues related to — to inclusion of both
women and minorities. And as I think you should know in 1993 what had been public
policy became a matter of public law, and as far as
I know, we’re the only country in the world that has a
public law that requires in federally funded
research that women and minorities be included
in clinical studies. So that is sort of the
genesis of what came about. And actually in presenting
this, when the law was passed, it really just strengthened
the policies NIH had. This was in the NIH
Revitalization Act. FDA has since had
language directing it to — to look at reporting. Remember FDA does
not fund research. It is regulatory body so
it doesn’t fund research. At NIH, we could say,
you won’t get the funds to do your research if you
don’t meet our policies and requirements, while FDA has to evaluate research
that’s done independently and has brought to it. So it’s a little bit different. But we were so proud
that we were able to show that we were beginning
to include women and minorities in
clinical studies. And then I begin to get letters
from members of Congress, mostly male members saying, “NIH
is discriminating against men because all data
is looking at women and minorities in
clinical studies.” So, I learned that when
I talked about this, I had to automatically
just cover myself by saying that we assume, and
the basic assumption is that men are being included
in clinical studies, and the purpose of our efforts
are to make sure also that women and members of minority
groups are also included in these policies, the purpose
being really to get back to the concept of ethics
and justice to make sure that results of research
are applicable to all segments of
the population. Remember prior to this effort
to move into inclusion in one of the major areas that
we’ve all had to deal with is that for years, women
were not included. And one of the reasons
— one of many reasons, but the major reason
used to justify that was that women were vulnerable. It was going to hurt them to be and then there were
going to be problems. And the same with the
reference to the — the PHS Study at Tuskegee that maybe we shouldn’t
have African-Americans in clinical studies because
we should be protecting them. We — we should not be
using prisoners because — Five minutes and I’m through? Oh wow. Well, maybe I
should just stop now. Let me see here. In any case, let me
see what I can do because I’m just
getting into this. But it — it’s a matter
of looking at inclusion. It is a matter of
ethics and justice. Alright, seven minutes. I’ll see what I can do. And so, we look at and
think about these principles of justice inequity that they
really need to be considered in the multiplicity of
factors that contribute to or prevent good health and
wellness in girls and women across the life continuum. And being able to not just
have access to healthcare, which is what we’ve been
referring to and always referred to that we get the results to
research, we know what state of the art or art of healthcare
is, and we want to make sure that women and minorities have
access to that healthcare. But in the current political
environment, we’re learning that we can no longer just
talk about access to healthcare because we’re learning that that
word can be used differently. Having access and actually
being able to take advantage of that access is a new way of
looking at that terminology. So we all are going to
have to think differently at how we express that. And so, out of this, I’ve now
moved into a new terminology, and I think this is going
probably be at the basis of most of my talks about
health and healthcare now that we really have to think about the sociopolitical
aspects. Now, I am retired
from government, but I still have a
government title, and I’m in a government
building. I’m not being political,
but if we want to think about contributors
to healthcare, we have to think
and health status. We have to think about those
sociopolitical aspects. And if you’re familiar
with that report that came out about differences
in health and — and — and mortality in different
counties across the US, I just heard a presentation
on Wednesday looking at that and that one of the
major contributors to differences are
state policies. And as we look at the
discussion now about — about what’s happening
in terms of healthcare and perhaps a new
healthcare bill and whether the states
will be controlling our national standards. We need to be concerned about
those sociopolitical aspects. Alright, let me see what I
can do in three minutes even with the southern
accent, Reuben, let me see what I can get
through here very quickly. We’ve always talked about
the many contributors to differences in health status. And I think women’s health
was one of first areas to go beyond just the biological
factors that contribute to the women’s health. You cannot look at women’s
health and think about women. Perhaps this should’ve
been true for men, but at least we did
this for women, and hopefully the men’s health
area learn from this too that we can’t just think of it
in terms of genes and biology and environment, but
we need to think of all of those other factors. And we really begin looking at
social determinants of health. This is not my diagram, but
it’s a wonderful diagram that — that I’ve adapted
and used from — from that article by
Dahlgren and Whitehead. But if you think about it,
we really started looking at social determinants of health
before there was an office of bio-behavior and
social science research, before there was
emphasis on that. And so when we look at factors
related to the health of women and girls across the lifespan,
we do focus on and we have to continue to focus
on, and especially in today’s environment
behavioral and social are societal factors,
as well as looking at race and culture, how women
relate to their bodies, environmental exposures. You know, not just looking
at endocrine disruptors in the soil, but also
looking at things like — like access to toxic waste that
— that there may be in an area or where one lives with
how far you are if you’re in a rural areas from having a
— having access to a physician or a nurse or a clinic, and
also looking at that access to medical — to
medical practice or I should say healthcare
practice, and of course looking
at life course. We — we’ve seen many different
variations or divisions of life or the periods of life,
of course the life span. And mostly, it boils
down to prenatal infancy and childhood years
that have less years, reproductive middle
years, pregnancy years, menopausal transition years
and the elderly frail, elderly and healthy aging years
to sort of separate those who are healthy elderly and
those who are elderly but frail because there’s sort of a
difference there in terms of — of looking at health
and health divisions. But the important point is that
it’s really a continuum of life. It’s not a — it’s not that
you jump from one to the next. And you know it’s like people and you see references often
referring to women under 50 and over 50, we know that age 50
is arbitrary because it’s used to sort of suggest premenopausal
and postmenopausal, assuming that age 50 is the
stand-in or the surrogate for menopause, and yet we know
some women undergo menopause at a much earlier age. Some women undergo
menopause at a much later age. So you can’t assume
that once you’re 51, you’re automatically fitting in
all the data related to women at age 50 and over or under. So we really need to think of
our life course as a continuum, and that’s what makes
the lifespan or life course important. And — and actually,
when we think about it, and with that in mind,
we really and one of the most important
things to come out of not just women’s
health research, but I think out of
science are those concepts to help us recognize that there
are contributing factors not just from birth to death,
but actually from pre-birth, meaning the entry
uterine environment that can affect our health as
we become adults and as we age. And so we really need to think about that comprehensive
continuum from the entry uterine
environment. I like this slide which came
out of our strategic plan that we did that really is sort
of based on the Barker Theory that is that if you look
at conditions or statuses, even things like substance
abuse occurring in — in adult years or later years, that often it can be
tracked back to influences in the pre — in
the in utero time. And so that Barker Theory,
we actually spent a lot of time funding research in that
— don’t hear as much about it, but it’s beginning
to come about again. But it really comes down
to the idea of looking at the importance of
the in utero environment for healthy babies and
for healthy adults really with that spectrum, which is
why I have a great time not understanding the objections
for providing maternal care, but that’s another issue,
but actually thinking that if you provide, and
whether you’re male or female and you’re helping to
support maternity care, maternal healthcare that
you’re actually looking out for both men and
women in their later years because of the effects a lack
of prenatal care can have on the health of the fetus
and therefore the health of who’s going to
be the adult male or adult female 30,
40, 50 years later. That is important. But — And so we can look
at the health factors, keeping in mind it’s a
continuum for prenatal infancy and childhood years really
looking, mostly focusing on the implications of
the in utero environment and prenatal exposures. We don’t see a lot of
sex differences and a lot of differences other
than — than — than — than low birth weight
babies and mortality and maternal mortality
in those early years. But getting into
adolescent years, which is where bad behavior
seem to begin to form. You have to worry about sexually
— sexual maturity and — and — and what’s happening
with — with — with STDs and handling
the sexuality, looking at eating
disorders, obesity, as it comes are the other
extreme eating disorders. Yes, teens are beginning to experience intimate
partner valance even in the adolescent years. We’re seeing issues related to
drugs of choice, but I’ll get to that again in a few minutes,
but looking at the teenagers with their parent’s
prescriptions out of their — their bathrooms for
substance abuse because it’s “a fun
thing to do.” But we know that seven out
of ten deaths for kids in — in this age group are related
to unintentional deaths like motor vehicle accidents,
homicide and suicide. So these are things that need to
be considered in that age group as we trans — but then
also, how good are we at delivering healthcare? Do teenagers — do adolescents,
do they go to the pediatrician? Do they go to the gynecologist? Do they go to the
general internist? Do they go to the
family practitioner? Or do they go to their friend
next door and ask, what do I do, and go to their buddies
in the — in the local gang or
local — local group? So we really need to give
more attention to healthcare, health direction and health
information, because we do know that ten — teens can carry out
some wonderful ideas in work and help improve the
health of their parents when they’re in on it. And then looking at
reproductive in middle years, we talk about going beyond
the reproductive system, but there is so much
more we need to know about the reproductive system,
so we can’t forget that. They’re reproductive
health issues. And again, it is important
to have healthy pregnancies, full-term babies, and that
continues to be important, in addition to fertility
issues, as well as — as fertility issues and — and
reproductive health and things like fibroids and endometriosis. But then really looking
at obesity, and we know how obesity affects. We look a healthy behaviors. Intimate partner valance
really becomes an issue here. Cardiovascular disease
and you’ve already — So I’m not doing a list
of all the diseases, because I’d spend all day
doing that, and you’re familiar with them, but just
pointing out so many issues that are a major concern
during this particular part of the lifespan continuum, and course cancers
especially this age, breast and cervical
and melanoma. Now with the idea and it seems that every place
I’ve been recently and I’ve been too
many places recently, but almost every
place I’ve been, I was in Boston just a few days
ago, and then again this week at several meetings, there
have been discussions about overdose — opioid abuse and I know you have
discussion session coming up. But you heard my
background is pathology, so I recently had visited the
— the DC morgue and the — the medical — the chief medical
exam, there’s a great young man, Roger Mitchell who is now
in charge of that office, but he was telling
me about the increase that they’re seeing right in DC. So I just looked, wanted
to see how that — that — that how the data there really
would look when put in terms of national data, which
you’ll be hearing about. But it’s interesting because you
can see that the major increase in drug use and drug overdose
use is among age 50 to 59, and so not in the teenage,
but the later years. Actually and women constitute
only about 25 percent in DC of those who die from
drug overdoses, but it — it’s interesting to see —
and it’s — it’s nice to see that women went
down a little bit last year. But look at the —
look at the variations by race and ethnicity. This is the kind of
data want to see. And just look at —
look at blacks for example. Now, the red line for 2017,
this year is only five months on the way so
we don’t have much data yet. We hope it won’t catch up,
but look at the difference between 2014 and 2016
and the number of over — opioid deaths, and of course
they’re mainly opioids fentanyl, etcetera and derivatives,
etcetera. So while the — while these fatal overdoses
are more common for males than females, we still
have the issues of women who about 25 percent are
women, but then beyond that, when we lose the young
men or the older men, the impact on the women of
the family in caregiving and taking care of the
family and the impacts of women are affected. Menopausal transition
— I — I could — If I could take off my
jacket and show you my back, I could show you lots of
scars related to the fact that I was the co-director of
the Women’s Health Initiative which you may or may not recall
was the study that looked at — It’s a broad study and CDC
was actually very involved in the public — in — in the
public health studies of that. But the major thing the Women’s
Health Initiative is known for was of the stopping of the
study early with recommendations that menopausal hormone
therapy should not be used for prevention of cardiovascular
disease or prevention of other diseases and that there
were more risks than benefits. And my back still itches from
the attacks I got from that. Well, that was 2002,
and it’s continued on. I just want to show you
that for the menopause area, the menopausal transition
to come — the major concerns
continued to be around the use of
hormone therapy. And I want to show you that the
preventative services task force just came out this
week with putting out again recommendations
which essentially say what in fact Marsha Henderson can
tell you is the FDA actually has the — gives the — the FDA
has never approved the use of hormone therapy in
menopause for the prevention of chronic diseases, although
that’s what most physicians used it for and what most women
thought they were taking it for, prevention of chronic diseases
and to keep them young and sexy, which is what we were sold on —
sold through our traditional — Don’t let me get
started on that. In any case, I want you to know
that this is again coming up. This is just this week, but actually what they’re
recommending is something that is actually Marsha and her
office are really responsible for the education of
women about this topic. So I just wanted
to show you that. And then looking at elderly
and frail elderly years — And I was watching the clock. I started at five
minutes after would — so I think I have
another five minutes. Is that okay? Alright.>>Alright.>>Thank you, because you really
called me up for five minutes and it was 15 minutes,
but anyway. Sorry, I’m watching. But looking at the elderly
and frail elderly years, that’s when we get into
issues like osteoporosis, as well as cancers,
again breast. We know the greatest risk for getting breast cancer is
being a woman and getting older. And then looking at the
fact that the new data shows that opioid and drug deaths
are increasing in older years. But the major we can
summarize all that by saying that when one gets older,
especially for women, but it’s true for men too,
but especially for women, we live longer, but
we’re more apt to have complex chronic
diseases. We don’t have just
one condition. We often have an interaction
of chronic diseases and that can be a major
issue for healthcare. So when we think
about interventions for health disparities for women
of color or women in general for midlife to beyond, we
want to lessen disparity. We want to prolong life. We want to preserve
mental acuity. We want to prevent
functional, physical decline. We want to be able to
get around, be mobile, not have to go to a nursing
home become of incontinence or not being able to — to
have free mobility ourselves and continued — I
shouldn’t say improved, but continued good
quality of life. And I just want to mention
briefly a major area, and I know that — that
it’s interesting if you go to your college reunion
or school reunions and you see the differences, as
you age along that continuum, I remember when I went and — And where is Rochelle who’s
also a Wellesley grad? I remember many years ago I
went and everybody was talking about menopause because the
class was getting to that stage where everybody was
going through menopause. And of course then I had
all the answers I thought from the Women’s
Health Initiative. Then the next one, everybody
was talking about dementia because so many people in
the class were affected by taking care of parents
or relatives with dementia, their in-laws or
their own parents. And that was the discussion. I don’t know what it’s
going to be when I go back for my 55th reunion next
month, but I can imagine. But anyway, but knowing that
dementia is a major problem. And we do know Alzheimer’s
is more common in women, not just because we live longer, but now it’s been shown it
really is more common women even — even with or in
spite of living longer. And so we look at
attention to — to dementia in that not just
Alzheimer’s but other forms of dementia how important it is,
but it then raises another area because important for women’s
health actually looking at what have some referred
to as the Sandwich Generation for those who are midlife
who are taking care of older parents, as well
as young, their grandkids. But then also looking
at the fact that for caregivers,
most are older. One in ten of caregivers in this
country are 75 years or older, and then we have the
women who are giving care and the women who
are needing care. And what I’m often preaching
and people ask how well I do. I don’t do so well myself, but I
hope all of you are doing better at taking care of yourselves, because we can’t take
care of everyone else. So now caregiving has gone from
just a sociocultural concept to actually being the basis
of research, being the basis of studies, being the
basis of the science. What is the role of
stress in health? How does stress and stress
coming from caregiving, as well as other factors
affect the health of women? Well, then to just sort
of bring this to a close, I’ve looked at this sort of in
terms of lifespan, but then many like to look at the
health of women in terms of leading causes of death. And these are obviously
from the CDC data. But heart disease, cancer,
and you notice stroke used to be three but now chronic
obstructive pulmonary disease has moved up to three,
Alzheimer’s is number four, and look at diabetes
that comes down. So those are for all women. If we look at the
divisions on the basis of — of racial and race
and ethnicity, we can see some variations while
heart disease is the most common for all women and for white
women and black women, cancer is the leading cause
of death for Hispanic, Native American/Asian
Pacific Islanders. But you can still see that
these same conditions, whether they’re one two or
three, they’re all important in the health of women. So we need to think
about prevention. We need to think
about treatment. We need to think about education
and which populations are at higher risk, and what
are those contributors to higher risk? Because if you want to
eliminate disparities, you’ve got to know what you’re
tackling so that you can do — be strategic in your planning
and that is important — important in — in going there. And if we look at
different racial groups, while we see the top ones,
these are the conditions that if you look
at various groups that you could really
summarize, and I’m not going to go through all of those. And then looking at threats
to help the age in caregiving, wellness, staying active, mental
health which is so important and looking at sexual
health, which we don’t talk about that much, but
how important that is, not just for young girls,
not just for adolescents, but also looking at
older populations. And if some of you have
heard some of the stories from nursing homes and those
that run nursing homes, we know that these are issues, but that’s healthy living
supposedly for those who are at that stage in age. So we need to think about all
of these issues in addition to drugs and alternative
medicine when we’re thinking about lifespan issues. And then we bring in the
immigrant populations. We now got more immigrant women, and they bring sometimes
different, not only different conditions
to be concerned about, but different cultural values,
different family relationships and how that affects their
ability to get healthcare or to get healthcare
or to participate for example in clinical studies. And then looking at
other undertreated, I’m calling them undertreated,
under-health service populations like the poor or those who
are in inner city urban areas or those who are in rural areas. How do we then make sure
they’re getting access to health services
and not just access, but actually being able
to benefit from that? We’ve got to make efforts to improve health communication
and health literacy. We’ve got to examine better — and I know many of you are doing
this, and you’ll probably talk about some effective ways to
disseminate health information and better use some of
the new social networks that can get this kind
of information out and with the focus
on prevention. So we know that preventive
behaviors can reduce the risk. And I want to just
point out something that really concerns
me quite a bit. We know that from
research, and I’ve talked about research actually
affecting practice patterns, that the IOM had a
committee to look at clinical preventive services
for women, using the latest in research on what really can
make a difference in the health of women through
preventive practices. And out of that came as part
of the ACA recommendations for preventive services
for women, which were then based
upon research, based upon the IOM report,
were then incorporated into healthcare as
part of the ACA bill. These were going to lose if
the ACA is done away with. And my question is, what happens
when we think about the lack of maternal healthcare? What happens when we don’t
have support for these kinds of screening services? And when we talk about — talk
about access to healthcare, it’s available, but how
will it be available? To me, this is a good example of
how research has moved forward. We know about the risk
factors for heart disease. One of the things I get
concerned about is that, and that some of
them we can modify, others are not getting
the message out with heart disease being the
leading cause of death, from — for most women, how
do we get women to understand what they can
do to protect themselves? But also we don’t want to
make a guilt trip for women when they’re thinking about
— And just one last example and then I promise you
I’m through, when we talk about diabetes, and we know
that there’s differences in diabetes prevalence. And we look at gestational
diabetes, and we know that gestational
diabetes occurs most often in women, especially from women
of color, and that we’ve learned that what is important
talk about life continuum, that women who have developed
gestational diabetes have a greater chance of
developing Type Two diabetes. After the pregnancy, you know
gestational diabetes usually goes away and women are told
to get a sixth month checkup and the diabetes has gone away
and they think they’re fine. But we’ve learned that actually
they’re more apt to later on, maybe years later
develop Type Two diabetes. But more importantly,
the children of these gestational diabetes
pregnancies are at greater risk of future obesity and
Type Two diabetes. And that means that
pediatricians need to know that they are born of GBM
— of — of GDM pregnancies. And that recommendation
needs to be carried forward. To me, this is a great example
of showing the continuum of conditions and how, you know,
this is the in utero environment and how it can lead to adult
disease and conditions. And that means we
need to make sure that our healthcare
system accommodates that. Well, you know about
all of these and I just mentioned Precision
Medicine, which is sort of basing — and
everybody’s doing it because there’s funding right
now for Precision Medicine. So everybody’s focusing
an institution on developing Precision
Medicine initiative. But it’s based on the genetic
approach to the individual, but I’m hoping in
that genetic approach to the individual we don’t
forget the importance of ethical and social implications of this
new approach but also looking at all of the other factors that
contribute to the development, the manifestations
of genetic diseases, but also the whole
health of the individual. So, how do we proceed? There’s still a major
challenge to overcome some of those political biases about
what constitutes women’s health. We need to continue
to get the message out that while the reproductive
system is important, women’s health is more than
just abortion and contraception, and I don’t know how we get that
point across more than we have. We keep trying, but we have
to recognize and make sure that our leaders and
our funders understand that women’s health is more than
just contraception and abortion, but reproductive
health is important — that we look at some of
these contributors to health and equities, that we need
to be informed and make sure that women and their
families are informed. And again, here I go with my
latest soapbox issue dealing with the sociopolitical aspects of healthcare policies
and practices. If we are going to have
justice for all and — and human rights preventing
women’s rights are human rights, that we really make — need
to make sure that biased and uninformed politics
don’t affect what we do. So, efforts need to continue
to provide advances that means through research
and basic knowledge, prevention strategies. We need effective
information dissemination. We need more effective cures
and interventions if we’re going to take care of these
diseases that affect us, but always with whatever we do, keeping in mind ethical
principles and common sense approaches,
because it doesn’t — we can be held as
smart information, but you got to have a good
dose of common sense with it and how it’s applied and what
we do with it if we’re going to bring about the
kind of health equity that Dr. Warren always talks
about and takes us forward with. And I know you’re going
to pull me off the stage, but this is my last slide. Thank you very much. [ Applause ]>>This next session is within the program is our
Plenary Panel discussion. The title is Women’s Health at
the Intersection of Context, Inclusion, and Public Health Practice a dialogue. So, the plenary discussion
includes women representing racial and ethnic perspectives,
women who live in rural areas and scholars of religion
and ethics. They will grapple with
the larger question of how can we ensure an ethical
practice of public health across multiple dimensions
of women’s lived experience? So we’re very excited to hear
the dialogue that’s going to take place today. Moderating our dialogue
is Dr. Dazon Dixon Diallo. She is a recognized visionary
and advocate in the struggle for women’s human rights
and reproductive justice, and the fight against HIV/AIDS,
on behalf of communities of women living in HIV– living with HIV and those
at risk for HIV and STIs. Dr. Diallo is Founder and
President of SisterLove, Inc, established in 1989, the
first women’s HIV/AIDS and Reproductive
Justice Organization in the southeastern
United States. Dr. Diallo is a member
of the Board of Directors at the National Women’s
Health Network, and she is a founding member of
the 30 for 30 Campaign for Women in the National HIV
AIDS Strategy. She serves on the Fulton
County HIV Advisory Board, and is a co-chair for the Act
Now End AIDS national coalition. Diallo was recently appointed
to the NIH, National Institutes
of Health Office on AIDS Research
Advisory Council. She has received numerous
awards and recognitions over the 32 years she has
been working in HIV/AIDS, and women’s health
and human rights. Please, a round of applause. [ Applause ]>>Thank you. Give me my hug.>>For you, thank
you so much for that.>>Thank you.>>So SisterLove is
not an accidental name for the organization. I — As we get started, I — I just wanted to first say
thank you for this opportunity. It is a privilege, and
I know, and I’m going to say this very quickly as
she walks out of the door, it’s been my privilege to have
an opportunity to be in the room and to hear Dr. Pinn address. Because I believe that in
1983 when I was a student at Spellman College, I became
the youngest, nonfamily member of the founding of the National
Black Women’s Health Project, which is the first ever black
women’s health conference held in this country at
a national level on black women’s
health issues in 1983, founded by Byllye Avery, and Byllye had the foresight
even then to make sure that Dr. Pinn was a part
of that really critical and historical conversation. I’m a proud member of the
National Women’s Health Network. So in a lot of ways, we
have relationships with just about everybody who’s on our
panel today and I’m excited to hear their thoughts
and ideas on some of these challenging issues
around the ethical practice and public health and in women’s
health across the lifespan. I’m also really grateful
for the question around community-based
participatory research and community engagement
because that is something that we struggle with a
daily basis as the fact that we are also a part of the
Women’s Inner Agency HIV Study as the only community-based
organization directly contracted into the study as
a research partner. And I would be remiss to say
that just as a person who is in her early 50s that I
am “perimentalpausal.” I am — I am not confused
about what I just said, and that I think that
mental-pause and — and that I think that mental
pause is probably more of an accurate description
of this experience, and so I ask early
on forgiveness if I get a little
few lapses as I go through meeting our
new folks this morning. So we’re just going to
start out, and I’m going to take my seat in a moment. But this really is a
dialogue and discussion. So it is sort of the same
way I run my radio show. It’s a kitchen table
conversation. We just left the
kitchen table down there on the — on the floor. And we’re going to start with
folks giving us just a couple of minutes about yourself
and maybe inside those couple of minutes, a reflection or
two about what we’ve talked about so far this morning or what we’re having
in our conversation. So I’m going to start
immediately with my left just to give you a sense
of who’s in the room. We have Professor
Dr. Rosetta Ross, who is at Spellman College and she’ll tell you a little
bit more about herself. And then we have — Is that
Maria sitting right next — Yes. And then we have
Maria Lourdes Reyes who was with the U.S. and Border Programs Project Concern International. She’s the Director of
that — of those programs. And then we have
Judy Monroe, President and CEO of the CDC Foundation. And at the end, we have
Kathy Yep, Professor at Pitzer College
of the Claremont Colleges. So, can we just start with
our first discussion question and then role? Alright. So, I’m going to just
start with our number one, according to the
2017 Proclamation for National Women’s
Health Net — Health Week, Cindy would love it if I mistakenly said National
Women’s Health Network, women are more likely to
be the primary caregivers for their families, caring
for their children, spouses, partners, parents,
caregiving especially when a family member falls ill, and honestly sometimes our
employers, our coworkers, our church members,
our friends — I tell you my aunt who is a
retired Family Planning Nurse ran five family planning clinics
for the Fulton County Department of Health and Wellness —
been retired almost 20 years and is still the nurse to
the family, the community, the church, the neighborhood
and anybody else who happens to learn that she’s a
nurse and needs care. In doing so, many women tend to put their own health
needs on the backburner. So what are some of
the primary challenges that impact our ability to
address this behavioral tendency and other factors that
negatively impact the health of women and girls
across the United States? So prioritizing our lives
begins our conversation. And anyone who is
ready to jump in, I guess we would
start right here with Rosetta introducing
yourself. And then we’ll go
down the line and come to the question in discussion.>>So again, my name
is Rosetta Ross and I teach Religious
Studies at Spellman College. Prior to teaching at Spellman,
I did teach at seminaries. My research focuses on religion and women’s social
justice activism and particularly
do I focus on women in the Civil Rights Movement — African-American women in
the Civil Rights Movement. Recently, I have been
working with African and African diaspora women on
ways that religion interacts with the quality of life of
women and girls across the — the lifespan and there
are both positive and negative factors
as you can imagine. So we’re going to introduce
ourselves and then respond.>>Yes.>>Okay.>>Thank you. My name is Maria Lourdes-Reyes,
and I am the Director for the United States
and Border Programs for Project Concern
International, a nonprofit organization. We are in 15 countries,
Asia, Americas and then the — the Africa. So my work — I am a pathologist
by training and practice, and like Dr. Pinn, but
found myself truly looking at the communities
that we serve. I was past President for
the American Cancer Society for the state of California, and was very involved
in the cancer world. I also worked with
the NIH, UC Irvine, being the research
liaison for the communities on Pacific Islander Cancer
Control in Guam, Samoa, the United States, Tonga. But I found myself moving onto
public health as a pathologist, really looking at
the communities. So prior to going back to a
Master’s in Public Health, I — I went through the business
school really understand what does that mean? Why — why do we have
many programs and yet people don’t come? And so really looking at
where are the communities? What do we need to do
that really needs to be from the bottom up and not
our usual top down approach? So having moved onto public
health then, I found myself at the beginning of life. Can you imagine? I’m a pathologist to really
looking at the end of life. And then the program came about
where I became the Director for a Healthy Start Program,
a pregnancy program for the — for HRSA, and so the
beginning of life. And I said, wow, okay, public
health is public health. Medicine is medicine. I can do this. And so I really started with
that and moved from that program to now a highest funded
level with HRSA looking at mentoring other states in
Arizona, Texas, New Mexico, California, really looking at what are those
disparities in — in pregnancy. But then of course
I’m a pathologist, so it’s a life course
— a lifespan. And then have many programs now
with chronic disease prevention. And just recently, working now with the Alzheimer’s
Association and Hospice. So, I feel like I — I — I
feel like I have really looked at the entire spectrum
of life, and — and then all of the above. And truly, my personal mission
statement which is what I want to share is that I am
dedicated to the realization of human potential
through servant leadership. And so as a servant leader, I am really at the bottom
serving the community. And that is how I wanted to
live the rest of my life. We’re not talking about age,
because I think I’m the oldest on this panel, but anyhow
as public servant leader. So thank you.>>Thank you.>>So I’m Judy Monroe. I love that mission
statement by the way. So I started my career as
family physician with the intent of practicing in an
underserved community and had a National Service
Corps Commitment through HRSA that took me to Appalachia
and practiced in — in rural America, where
it really hit me hard, the issues facing
women and rural women. And from there, my husband
actually led me into academia. We went to Indiana University. I joined the faculty there. From there, went to
St. Vincent Hospital, part of Ascension Health to
direct the residency program in Family Medicine, where
I thought that was — would be what I would do
in my career and did a lot of women’s health through the
residency program and a lot of teaching, but then was called
to be the State Health Officer in Indiana, and that was
my journey in from Medicine to Public Health and I became
a State Health Officer in 2005. And after five years of
serving as State Health Officer and loving public health,
then I was called here to CDC and became Deputy Director
under Dr. Tom Frieden, and — and reported to him
for six years. And now I’m with the
— And I established — We established the
Office of State Tribal, Local and Territorial Support
where I had an opportunity to work with all the
health departments and communities across
the nation. And now I’m with
the CDC Foundation, pleased to be in philanthropy.>>Hi, good morning. I want to thank the
offices of Women’s Health and Minority Health Equity
and the National Center for Bioethics and Healthcare for this interdisciplinary
conversation, grassroots and grasstops. I think it’s really innovative
in that way and it’s an honor to be on the panel with you. So I am Kathy Yep. And my pronouns are
she, her, hers. I’m a cisgender Professor
of Ethnic Studies, and I’m based the
Southern California in Claremont Colleges,
mostly an Associate Dean of Faculty looking at
faculty development, as well as diversity
equity and inclusion. And think my offering
for today is thinking about the framings
of a research. So in pivoting away from
just exclusion to inclusion, but to thinking about
the paradigmatic and positionalities and
how do we ask questions, who’s in the room? Who’s not in the room? I’m a fourth generation
Chinese-American. My family is all
San Francisco Chinatown, and the first generation
college student, first generation faculty
and now administrator. And I think in terms
of what I hope to bring to this conversation
is ways that women and under-resourced
populations have different forms of knowledges that can
inform our decisions on a policy level
and healthcare level.>>Thank you. I’m already fascinated,
how about you?>>Yeah.>>Yes.>>So let’s come back
to the question, right. What are the primary challenges
that impact our ability to address the specific
behavioral tendency around women caring for so
many others before we care for ourselves and some
of the other factors that negatively impact
the health of women and girls across this country? Who wants to jump in with
what your first reaction to that question was even when
you first got it in your email? What did you go, humph?>>So — so — go ahead.>>Well, I’m — I’m going
to jump in because this — this question hit hard for me. A year ago, Mother’s
Day weekend, my husband and I attended the wedding of
a really great friend of ours, a pediatrician we’d
known through the years that was practicing,
actively practicing pediatrics in rural North Carolina. We attended her son’s wedding and it was a wonderful
weekend, just fascinating. Now this individual — this
friend of ours always took care of everybody before herself,
her patients, her family, did a lot for her kids and her
answer to everything was always, “But they’re my kids,” right. A month from the
wedding, I got — I went to the office
one Monday morning. My husband called. He’d gotten word that she’d
had a massive heart attack and had died, and she
was in her mid-60s. She — This question hit hard
because this is an example — My — my friend and colleagues
death is an example of someone that did care for everybody, always put her own
health on the backburner. We all fussed about her,
and we got after her. I personally got after her
all the time about taking care of her own hypertension
and issues. But it also is an example
of it happens to all — We’re all vulnerable, and
I think Dr. Pinn said that. This is a pediatrician. She knew better, you know. So she had the knowledge and still put her own
health on the backburner. So I think part of
it is we’re fighting in some ways evolution
— It’s evolutionary. I mean the other is the — We
— we want the gene pool to — to carry on and so I think
women over the, you know, eons have always cared
for their families. We know mothers who’ve always
put themselves, you know, or — or putting women in general
whether they’re moms or not at putting the family first. But then there’s culture. And culture eats strategy
for lunch as we know. And — and I think there’s just
such strong cultural, you know. This is what women do. We were the caregivers and so
— and that’s the narrative. I remember as a small child
at hearing the narrative of my grandmother and my mother. Quite frankly in my case, my
mother was like, well, you know, it’s a man’s world and my grandmother was saying
she shouldn’t be playing with microscopes
and chemistry sets. She should plan to make toast
for her husband someday, right. I mean, literally,
that was the narrative. And as a very young child,
I didn’t buy the story. But why was that? Why did I not buy the story, but how many women
do buy the story –>>Right.>>– right? They buy the story all the time. So I think there’s those kinds
of issues, and then the other — And Dr. Pinn hit on
this, health literacy. We’re up against that. I saw that in rural
America when I practiced. Women just — I would
have women coming in with end-stage breast cancer
and their complaint was earache. And they — they
weren’t even aware. I mean it was just shocking. And so the health literacy and
even knowing what, you know, what was wrong with their
bodies was really power — a powerful lesson for me when
I first got to the county. And — and then, you know,
I think for women too, there’s some self-esteem issues. We have things like
depression that — that is prevalent and they
interfere with their health, and then trust of the medical
profession I would add as well. So, I’ll stop there.>>Thank you.>>I — I — You mentioned
a few things in there, but I think as you’ll find, we have different perspectives
based on our backgrounds, theology/religion, rural equity, the ethicist among really the
two ethicists among the group, and I was asked to really talk
about the Hispanic population in many of my programs. I am Filipina, but I
am 50 percent Hispanic, grandparent from Spain. But we have a lot
of programs dealing with the Hispanic population. So what I’m going
to share would be about the Hispanic population. And Dr. Pinn mentioned the
social political aspects that is really besetting many
of their program participants. At — at the core of the primary
challenge for this whole thing at the core of ethics
is that values and beliefs of stakeholders. That was mentioned
again and again. And so you mentioned
culture, the beliefs. That is the even not
just among Hispanics, among all the ethnic groups
in the country, the value and belief of the stakeholder I
think is the primary challenge. But for the Hispanic population,
the culture, the barriers of language and transportation,
we have many women who are pregnant who don’t
even speak the language and right there and then
is a barrier to access. But then the how, how do
we get them out of that — the mental wellness, the
lack of mental wellness, not only for women, for girls? But I truly want to
emphasize also for men, because we’re not going to be
able to have a holistic reach to our women and girls
if we’re not going to involve the father’s or the
male partners in our efforts, but truly addressing
that more comprehensive. When I talk about Hispanics
along the border, we — The — the various issues, the
lack of health insurance, the poverty level which is
at one of the highest rates in the country comparatively,
depression, 42 percent of pregnant
women are — have domestic violence
and are abused. And then the Colonia’s — You
know I cannot even imagine. We just had a global leadership
conference of all the countries that PCI is in with the
country directors being in Washington D.C., these past
two weeks, and they were saying, “Well how do you look at the
mother and child in the world?” And we — and I say, “But take
a look at the mother and child in the border areas
of our communities in Arizona, Texas, New Mexico. They live in stables
with a horse. They don’t have water. They have to take their
truck, if they have a truck and get water to bring home. They still have an
outhouse, so I mean we do in this country still have
similar areas with many of the challenges that are
in developing countries. And when you took — talk
about the illegal immigration or the immigration per se, we
won’t even go to the politics of illegal immigration
or immigration. But when you think about
the undocumented population, a third of them have a
child that is a US citizen. So we need to really
think about the impact on what Dr. Pinn said, political
— social political aspects. And I think at the very core
of what we’re going to be doing in the communities, that needs
to be at the core of that and the value and belief
of the stakeholders.>>Okay, well I actually
want to begin with something that you mentioned as well
Judith, and that is the — the perception that
women are caregivers. I think that we still need
to talk about that a lot and how it ends up making such
a difference in women’s lives and even the way our logic around women giving care is
not consistent with the logic that sometimes privileges men. For example, one of the
things that I thought about immediately was that
there is an emotional element, but there is also a physical
element, because giving care to some person means lifting
them, changing diapers, making sure they have
proper nutrition, etcetera. And there’s a lot of heavy
labor, but that gets connected with women, although we often
think about distinctions between men and women around
the issue of physical strength. But that is not taken
into consideration when we talk about giving care. One of the other
things that I thought about immediately was the extent
to which religion plays a role, and this is something
that I’m always talking with students about. Religion is interacting
with almost everything. And it plays a role
in the way we think about what women’s
responsibilities are, but even the notion of, and I’m
going to push back a little bit on the idea of servant because
especially in Christianity, there is a propagated the
idea of being a servant and even a suffering servant
that gets attached more to women I think than
men because of the idea of service being
something that women do, so there are theologies that are
often being preached and persons on the ground sharing
those at well — as well that interact
with the way we think about women taking care of
themselves because the concept of love also in Christianity. But I think there are
ways that they’re — they’re connected to this and
other religious traditions. I know Christianity more. But the concept of love
is also often thought of as not attending
to the self, right, giving to the other, right. So agape is understood as in
some Theologians perspectives, flowing everything out of
yourself to the other person and that there’s something
problematic in yourself as a Christian if you are
attending to yourself. So our religion is as well. A couple of other things I
wanted to note were the ways that religion interacts with
making it difficult for women to build bridges
so that conceptions about who is a woman,
especially in regard to queer and transwomen and the
possibility of collaborating across the spectrum of women
sometimes gets interrupted in terms of women attending –>>Yes.>>– to themselves because
of the inability to push against theological perspectives
about who actually is a woman. And then finally for black
women, I think the legacy of having black people, black
bodies having been chattled, it interacts with the
conception of servant and women because servant is also
understood as person of color is black person, and
I think that is in the psyche of all of us actually and
something that we should talk about as we’re pushing
against this.>>And — and as we go to Kathy,
just as you were saying it, because my whole life, my whole
world is talking about sex and I love that,
is the connection to the sexual identity, sexual
health, sexual well-being and sexuality of women in
connection to servitude. And that, whether it’s through
the historic horrors of slavery or even through the older
context of marriage, why marriage existed, why
we’re in it, why we’re not, what happens in terms of
those gender dynamics. It’s all still related to this
sense of service servitude and prioritizing others — So, and religion plays its
own role in all of that.>>And if I can just
quickly add I think the — that there is a deep
connection to what’s — who is sex traffic and the
idea of that being of service to persons who are the Johns.>>There you go.>>Yeah.>>And I think that –>>Just for you Kathy,
that was –>>Well I think riffing off
of that is this idea of — of trafficking and the
social constructed of — of servitude and sexuality is
there’s a normalization of it. And it becomes these categories
like culture or gender. And then we use those categories in a normalized way
in our research. So I think, particularly
for Asian, Asian-American and Southeast Asian women in
history, and I can’t speak for all of the population,
but I will offer what I know from my understanding of
literature is, you know, we have our histories of
being human trafficked, whether it’s comfort women — Korean women with Japanese
soldiers, etcetera. But often the research tends to
look at it in terms of culture, Confuciusinism and shame. And it doesn’t go beyond that. It doesn’t push back
beyond that. And we don’t look at
historical traumas. We don’t look at
human trafficking. So, I come to this
conversation doing a lot of community-based research
[inaudible] action research alongside immigrant
and refugee elders. And, you know, the suicide rate
for Asian women over the age of 65 is the highest of
all women of all races for — for that age group. So a lot of the research might
say it’s because of obedience or because of shame
factor or under-utilization of mental health services is because of this flat
notion of culture. But what I get to do is I
get to learn from immigrant and refugee elder
women at the library about what are the difference
social political dynamics of their health? I posted a prompt to some of the immigrant women,
and they pushed back. Like we don’t want to talk about
what you want to talk about. But — So we ended up talking
about their biographies and their stories, and
through the biographies and the history timelines,
we learned about women who had been trafficked,
women who had experiences with domestic violence
in multiple countries, split family labor
and emotional care. We learned about occupational
safety health being seamstresses or work in the laundry. And through that process,
we learned about access to healthcare because of —
because they’re low wage. So part of it is they
wrote their stories, and then those stories were
the basis for grant writing. So I’m kind of looking
back to thinking through conceptually how we need
to have more complicated ideas of culture, and then
also who tells us about this complicated
ideas about culture. And perhaps from the populations
we’re trying to study can — can have a seat at the table to
unpack through their stories.>>I love that. Sister Love, we actually have
a whole initiative called, “Everyone Has a Story.” There’s a whole video series,
and it really is about the power of the lived experience
to inform the programs, the service delivery, the
policy work, the advocacy work. So thank you for that. And you actually
started touching on the next two questions all in
one Kathy, so I’m going to just into that, because
we are going to move to you all at about 10:15. I’m just letting
y’all know that now. That’s my aim. That’s not my promise. I mean, 11:15 — I mean 11:15. That’s my aim, not my promise. But — So I’m actually going
to throw the two questions out together because I think you
sort of already have provided where the synergy is
in there a little bit. One is what are some of
the most ethical approaches or best practices in — in — in ethical approaches for modifying some
of these patterns? Behavior and other factors. And — and then how can women across that lifespan
actually have a stronger voice in decisions affecting
their health? I think those two things
actually go well together in that you started working
on that a little bit Kathy. So if you want to come in
on some of that to continue and then whoever else wants to
jump in, that would be great.>>So there’s two ways — When
— when I read this question, I was excited about
it in two ways. And one is to think
about the possibility of democratizing
research processes and community knowledges. So we have Dorothy Smith and
Patricia Hill-Collins who talks about situated knowledges. And that’s a valid
form of evidence to have our data
informed decisions. Again, I just get scolded by
these “aunties” at the library, but it’s such a good
practice as a researcher, as an administrator,
as a teacher. And, you know, they
have multiple ways of sharing their understanding
of what our social determinants of health and how
do we upend them, through autobiographical
cookbooks. We’ve done poetry
readings together and in multiple languages. So that’s the one piece. And the other piece is, you
know, I am in higher education and I have the — the
wonderful opportunity of training researchers. Most people who will
go onto Med School or critical global health,
because I’m at LeBard School, so it’s more on the
Bachelor’s side, and I think that’s
the big question for me is really
pushing my students to ask what do they not know? And what do they need to know? And what are their
positionalities that shape — Maybe they universalize what
their situated knowledge is. So I think that’s a question
we have to ask ourselves as we enter any community or
any room or any research project or any grant proposal,
is what do I know? What do I not know? And how does that in fact
impact my sets of questions and how does that impact in what
Dr. Warren said is my ability to listen? Because ideally from my
perspective and training, as a researcher is someone
who can listen deeply with humility and
with compassion.>>Now, I’ll pick up. There is the listening piece
that, you know, in the practice of medicine, a really
key lesson is you start where the patient is at. I mean that’s the —
that’s the starting point. And that means you need to
listen, you need to find out what their story
is and understand that. And so I think and I love what
you do with your radio show because I was going
to say on this — I mean I think some of the approaches are using
the media very creatively and getting more voices out
there, that power of story is — is so amazing in my own career, because I’m a public
health practitioner. I was a clinician that actually
reached to the media when I was in Appalachia, because I
wanted to get these voices out and be able to educate women. The power of the media,
that’s how we rate the — reach the masses, right. And today, both with
our social media, I think there’s more creative
ways that we can do that. Obviously there’s a dark side to
the social media and we’ve seen that with bullying and so forth, but we need to get the
positive I think in our films. We should be influencing
more of Hollywood in some of the films with our songs. You know, when we look at —
at pop culture and so forth, what — what are the messages that are getting
out that we can do? I also — I wanted to
touch on clinician bias, because I think we do need to
recognize there’s clinician bias and — and we need to
think about being — being more forceful
in our education of — of clinicians whether
it’s physicians, nurses, nurse practitioners
and pharmacists. I mean you can go through
the list, because there’s — there’s — I saw that a lot of
the suspicion in role practice, the bias that — that individuals had to
the point sadly — I — I was actually told when I went
into Appalachia to practice that I was the first physician that had treated
them like humans. And that was — I got to
tell you that hit me hard. But I — but kind of bridging
into the second question for the stronger voice, I’ll
just kind of end with this. You know, the — When
we talk about ethics, the tobacco industry has had
some pretty unethical practices over the years. And when I was health
officer in Indiana, they came out with a
cigarette, the Camel Number Nine that was focused on women,
particularly young women. And they would have parties,
inviting young women to come and to have — and give
them free cigarettes along with doing their
nails and their hair and giving them a Martini
Number Nine and so forth. This was all over the
news back in the — back in the probably
about 2007 or so. And so one of the things as a
reaction to that, and I — I think fear is a
really — That’s a — that’s an emotion we’ve
got to be very cautious with because it can be
very damaging, right. But I think anger is
something you need to harness, and harness it productively. And so as a health officer
that had cared for young women that had been addicted
to tobacco and then saw the
consequences on — on the birth and low
birthweight, I hit the ceiling when I heard about this. And so we started something
in very short order called, Influence Women’s
Health in Indiana. And — and what we
did is we started by convening the most
powerful women in the state to educate them about
what was happening. And from there, we
rippled through every — We had events throughout
every county where women would come together and they would tell
their stories, and they would be
able to have dialogue. And we — we helped
facilitate that. And it was one of the
most powerful things that I look back on it. Finally, and when I go back to
Indiana, even the First Lady, the — the governor’s wife
always talks about what we did and the legislator, so I think
you’ve got to involve the top and — and the bottom, right,
I mean, all across the spectrum of women’s voices, we need to
get angry and — and mobilize.>>And I actually will pick
up on involving the top and the bottom and
make a connection to situated knowledge. When I thought about this
question, I use a lot of images from the Civil Rights
Movement and I thought of Fannie Lou Hamer testifying
before the Credentials Committee of the Democratic Party in 1964. She was a very unlikely person
to be doing that, but she did so and was able to do so
because many people reached into where she was in a variety
of ways and brought her voice into the conversation. So, the situated knowledge is
important, but there has to be in terms of the ethics
of — of attending to — to our persons and overcoming
some of the patterns, there has to be from the side
of persons who have power and access and influence,
reaching in and making possible getting
that situated knowledge. And it is not only
about getting persons from one place to another. It also has to be about making
sure that people who are talking with each other communicate
with one another and so issues of hospitality are important, even translation may be
important, and it may be that people have to learn
each other’s language. But getting situated
knowledge, and there’s a lot of work involved in that. And if I think of the
Department of Health and Human Services
and its agencies. For example, as the
entities to whom the question of ethical approaches are —
is directed, then I would ask, what are some ways that personnel can be directed
toward getting situated knowledge from the
most vulnerable persons who are the least likely to
be a part of the conversations because there’s information
there that needs to be gotten into the conversations, yeah.>>Yes. Social media might be
changing that a little bit. I just — I know that even one of my physicians has
their own Twitter handle and their own hashtag. And all you have to
do is make a couple of the right comments,
and you get reaction.>>Yeah, but –>>Of course.>>– I — I actually
think there are — there are populations who
are not even interacting at that point where there’s
knowledge to be, but I — I agree, it is changing ->>Absolutely.>>– yes who’s talking.>>And — and — and — and
as Maria comes in, I just — I want to acknowledge
your own acknowledgement of Sister Fannie Lou Hamer. And that of course for
those who don’t know, that’s where we also get the
standing moniker, “I’m sick and tired of being sick and
tired,” and I think that a lot of — In — in addition
to her political activism, a lot of her harnessed anger
also comes from the fact that she’s a survivor
of what we know as a Mississippi Appendectomy,
which was forced sterilization on so many poor black
women in Mississippi and across the south
during that time. All of these issues are — I mean, to go from forced
sterilization to taking over the DNC are connected, but we don’t have
those conversations in public health
spaces, where policy and implementation hit
the road in our lives. And I think that she’s a perfect
example of what the voice, the questioning of the
ethics and the movement around making change happen. Yes.>>And I’ll follow through on
what you just said, the policy and implementation connection
— so, and then the voice. But are we truly listening,
Dr. Warren’s question? Are we truly listening? I mean, we — we go off and say, we’re doing community-based
participatory research, but are we truly
doing community-based participatory research? Is that voice really
at the table to — to get that knowledge
that we really need to do? I think we have come a long way
but we have so much more to do. And I wish I could do — do the Energizer Bunny to
where we’re all already in that energizer bunny,
and we lead to the end of the sci-fi movies,
and I’m a movie buff. But — but talking
about fast forward — I mean, we can’t even be
doing things fast enough. But when I looked
at this question, I was really looking at, yes, Dr. Pinn showed the
biomedical model, but when I teach public health
and health policy and law, I look at that socioecological
model. At the center of that and
at the center of anything that we do even in servant
leadership is that self — that person at the
center of that. But are we really looking
at all of those layers and truly looking
at an approach? Perhaps we need to when
we look at an approach, look at every one of those
layers, the self, the community, the organizations,
the environment, and at the very core of that end
cycle is policy and government. Are we really looking at the
policy and implementation from the perspective
of the voice? So when I take a
look at this in — in addressing how do we get that
voice from the women and girls and people, one of the
things that I would like to really emphasize is
that we need to address first and foremost I think
that mental wellness. It is now this year, the lack
of is now the leading cause of disability in the world. And we put it aside. We don’t have enough funds
or resources allowing for improving mental wellness. But even then, at the very core
of the programs that I have, I don’t do any program, one
without the evaluation piece and one with — without
involving the people at the table to tell me how do
I really want to reach them? And then their voice
is at the table. But looking at what are those — What are the things that I can
do for people in the community to help improve their lives. And at the core of any
program I have is life skills and mental wellness. That is the initial piece that I do before I even do
chronic disease prevention. I look at teaching them how
to budget, how to communicate; what is that financial
literacy like? Where are they in
their education? What do they need? Is it a language? Where are the — Are
they in elementary? Are they going to — What —
what is that path like to get to high school education? Because we know that is attached
to better health outcomes. And so giving them the
tools to get out of poverty, teaching them how to save. So those resiliency factors,
resiliency tools is what I’d like to share and
really emphasize. I was — I was at
the World Congress for Women’s Mental Health in
Dublin just six weeks ago, and even throughout the world
when we’re looking at anything that we’re doing, we’re doing
all these approaches either on the treatment side, too late,
kind of sometime, but not enough from the prevention side. But even then, at the very core
is to really help people have that tool and factor as to
being resilient, otherwise, they’re going to continue
in this very bad cycle of falling back and falling
back and not truly emerging as the power and the
voice that we need. And until they get
that self-esteem back, that little bit of I am saving,
I have this tool, I can go back to school, we’re still not
going to hear their voices. And even as much as we try
to listen, we’re not going to hear it because
it’s still going to be that whisper that’s even beyond
our — our decibel hearing.>>So, I — We’re going to move
to the next question and it — But it’s — I want to segue it
with continuing the conversation on women and stronger voices. And so I have this next place of not only understanding the
whole issue around resilience and the resilient factor, but
as someone who works with women who are survivors of violence,
gender-based violence, other mental health issues,
particularly dealing with HIV and sexual relationships and
risk patterns and all of that is that what moves me and
fascinates me the most about this work is the women who
not only survive and — and — and our living the resilience,
but then move from resilience to revolution where they
actually become a part of the movement for change,
whether they’re going to school to become nurses or
public health practitioners or advocates or activists in the
community on behalf of others with the same or similar
stories and issues. So, you know, in January, there
were hundreds and hundreds and hundreds of thousands of
men and people who love women and people who love us, who
all showed up in Washington for whatever their issues were. And it was a myriad of issues
that some was around anger, some was around fear, but people who had never found their voices
before, found their voices, even if for a day or for, you
know, another hashtag or a pink, you know, knitted cap. So the — the question would be
that in terms of the decisions that are made about women’s
individual health, what are some of the other ways that you
are engaging those voices, not only on behalf
of their own lives, but communities of
women’s health? What are some of the other ways that we’re finding
women find their voices?>>I’ll — I’ll start. Thank you. I think one of the
things that — that I like with HRSA and
CDC, the Maternal Child Health and the CDC, the racial — the ethnic approaches
to community health, the Reach Program to
eliminate the disparities. One of the mandates — It’s a mandate to actually
have an infrastructure in the community would —
called Community Action Network and Collective Impact. And the mandate is that
the membership needs to at least 25 percent of
the membership in any network or any group meeting
that we have has to be from the community
and participants. I think short of being mandated,
we really must do it, but again, that implication of a
mandate, you have to do it, because it’s a benchmark. You’re being provided monies that are very hard-earned
dollars that you really need to perform in these benchmarks. And sometimes, that’s the only
way we’re going to have — we’re going to make the
changes is to make the mandates. Because we can talk all we want about community-based
participatory approaches, but unless we mandate that the
voices need to be at the table who are community members, who
are participants, then we’re — we’re not going to get
that much ahead of us. So to me, I — We use that in
the programs that we have is that we follow the mandate with
at least — be nice if that — if it goes — the
percentages go more than that. At least 25 percent of
the membership needs to be from the participants themselves and from the community
themselves. And I think that’s when
their voice is at the table.>>So starting to talk about
how we’re changing our current practices basically. Yeah, go ahead Rosetta
and then we’ll do Kathy.>>Okay, one of the
things that I’ve — I’ve been working on recently is
actually not only with the US, but a gathering of women in
religions, plural, African and African diasporan women. And although the event — the consultation begin in the
academy, it is a consultation of practitioners and scholars. So, the voices of
women in religions, interacting with them, not
only from the perspective of what we do in scholarship,
but also hearing their voices. And the context of religion or religions is an important
context to hear women’s voices across the social strata. And I think in addition to what
we are doing or what I’m doing in my own practice, I think it’s
an important place to consider because the ritualizing that
occurs in religious traditions, the words that people
hear and the things that they do become a part
of how they think the world. So health agencies
seeking places to interact with the ritualizing person’s
lives I think is also an important possibility for
expanding their voices because I know that what
people hear in churches, I hear them repeating and
if it’s something different, they repeat it and it becomes a
part of their way of thinking. And I think that that can
be done in regard to health and caring for the self as well.>>Absolutely, Kathy.>>And I appreciate you talking
about the way things are echoed and resonated in
different spaces. And — and hearing from
this panel, I was thinking about it’s more than just
info and content delivery. It’s also about that process
of transformation, right. And I think you example
of resiliency is, is it’s an assets-based
approach, right. So how do we — how do we
draw upon and water the seeds of leadership in
different individuals? And that takes time. And that takes a committed —
a commitment to a relationship, and we were talking about
the earlier at the break. And — and I think that doesn’t
always fit in a grant cycle. That doesn’t always
fit in a semester. And so I think that’s that
element of humility with that. So an example would be I was in
a discussion group with again, the aunties of the library. And, you know, I had one
prompt that was — what — what do people need to know
about you that they don’t know? And they spent about
30 minutes on what does that warden need mean? Is it need like food? Is it need like shelter? Is it need like access
to — to resources? And then I kind of got to the
turn to needing that meaning in your humanization,
what do people need to understand about you? And one of the — Two of the
“youngerish” elder women said, “I don’t get paid for what I do. So I don’t know if I
have a voice in my home.” And the elder woman said, “No,
you were worth something,” and this was all in English and
then mixed with Chinese too. But they said, “You were worth
something,” and they kept on repeating that over and over. And that was — ended up being
the theme of their anthology. And I think that was that
shift from info delivery to transformation, and
then the opportunity to take a leadership role,
and then now over time, we can set up the
infrastructure to deepen that, taking that phrase, “You
are worth something,” and then adding onto that. I think that’s that piece of it. It’s not just adding voices and
not just provide information, but sets basis for
transformation leadership.>>So, Judy I’m going to — because I know you’re going to
respond to that, but I’m going to go ahead and throw this next
question in so we can grapple with it for three
or four minutes. And — and that is, you know,
it’s a perfect place to come and land with the CDC
Foundation is as we’re talking about these current practices and these really granular
stories of what it really looks like in the implementation
space, in addition to how we’re
expanding, what are some of those resources needed
to build the capacity for addressing some of
these ethical issues that impact practice —
public health practice, research or even policies? So some — some worst things about the current landscape
and then what are some of the resources to
actually implement some of these innovations.>>Yeah, so — so
that last question, the only thing I did want
to highlight the clergy and the public health practice,
we used the churches a lot in Indiana to magnify the
message that we were trying to get across because it really
makes a big, big difference. And then I think
standardization too. Accreditation is an area that health departments
now have accreditation and there’s opportunity in that
because that gets modified, and you’ll — refined are we
learning the right things? But when we think
about resources, so money, money, money. Now that I’ve been at the
foundation, I get that a lot. But it– You know,
its people, processes and technology are what we need
and that does take resources. But we can be creative
about our resources too. You know, I — I
wanted to mention this. I’ve loved the story now of
how in rural communities, they’re using like an
uber-like transportation, but they’re doing it
with community members because they get the technology. It’s like — So sometimes
it’s not actually additional resources or — or minimal
resources can be done if we leverage the
community at large. And then you give people even
more involvement and purpose and might help with some
of these other issues, those that might
not be involved. But I think that expertise is
one of the things that’s needed, when we talk about resources,
expertise at the right time at the right place
as — is important. I think case examples, I think
people need again stories and I love case-based examples
to help bring things together, communication as we all know. And then — and all
of this, we’re talking about the analytical tools. And the — and the
analytical tools that are there for the practitioners. We got the — the translation
from research to practice. Where the rubber meets the road
is so critical if we’re going to really make a difference
and have the implementation. So I think we need more tools
in — in regards to that.>>Anyone else?>>I had — I have
something to add.>>Go right ahead Maria.>>Sorry.>>Yeah. So I’m going
to go basic on this question
about resources. Since time about
25/30 years ago, we looked at now what’s called
an evidence-based promotora model, which is the
community health worker model.>>Right.>>That does not really expand
it into all the ethnic groups. And there’s 20 million, no, 20
different names for community of workers, patient
navigate his family, navigators, whatever it is. I think at the core
of resources, I want to just really
emphasize the need for actually standardizing the
community health worker model and I’m one of those
proponents of — of certification
with the states. Not many states have looked
at that, and the reason I say that is because it goes
back to reimbursement and actually how
do the people feel about the work that they do? I’m not discounting the
community health worker work, that volunteer that goes
and helps their family, the faith-based, but I
still am not an economist, but I’m very much into
economic development, those resiliency tools,
give them something that makes them feel
worthwhile or that worth that Kathy you talked
about in the aunties of the library with the aunties. But, so community health worker
model is actually being used now in many communities. I attended the communities
Joined in Action Conference in San Antonio three months ago. And many models in the
cities and counties look at multi-sectoral approaches,
the libraries, the police, the — the academic,
the nonprofits, the people at the table so
that multi-sectoral approach but at the core of that service
delivery is the community health worker. And I think that needs to reach in all the different ethnic
groups even if we looked at the evidence based initially
on the Hispanic population, the evidence is there now
that it is a valuable tool for improving lives
through having someone from the community help
provide that — bridge that gap. So I really want to emphasize
that because it’s not enough that in 2016, only 48,000
community health workers were employed in all 50 states. That’s not enough, because we
need to reach those communities, and it’s at the core
of that service.>>Thank you. I’m going to — If you — We’re going to come back
at the very end for folks that have some closing comments, but I want to really appreciate
the thoughtful responses and really critical
issues put on the floor. And I would echo the issue around the community
health workers which is a worldwide
issue in terms of respect and inclusion of that field. But I also want to throw in that
most community health workers come through community-based
organizations, which is another
part, another layer. I’d be remiss if I
didn’t support my sector that is a whole other layer
where there’s so much potential and so much opportunity
for capacity building and system strengthening
that we get left out from the research
world all the way to the implementation sciences
and so I just want to make sure that — that community
question writ large deserves and should be getting a lot more
of the investments financially, as well as infrastructurally
as possible. So, with a round of
applause, thank the panel for our conversation thus far. [ Applause ] So we’re — Parting
thoughts and — and it can be in response
if you like, but let’s — let’s move through
parting thoughts –>>Okay.>>– one or three sentences
or something like that.>>It’s –>>I promise to keep us on time
and now I’m a little bit over. So –>>– kind of in response, I wanted to not directly
answer the question, but to lift up again the idea
of changing consciousness and ritualizing what people do. So I think the interactions
with religious traditions and religious communities
is important at any level. The creeds and confessions
that are written and repeated that sometimes get crafted at
the local level and sometimes at denominational or organizational level
is another way to interact with what people
are thinking just as the curriculum is
developed, those creeds go out and are spread and — and — and
that is one thing that I wanted to lift up as a possibility. The other thing I wanted to
affirm was relationship building and how important that is and to underscore
building relationships with what may be unlikely
communities and context. And when I think about
African-American women and communities, I think the
Black Lives Matter movement may be an untapped resource
in regard to — Well, I don’t know in regard
to healthcare emphasis for black women in particular. Because the Black Lives Matter
movement is very intentional about looking at all of black
life and being inclusive.>>Interruption — Did everybody
see what Black Lives Matter did for Mother’s Day weekend? Was everybody up on that?>>No.>>Raised money over the last
month to bail out black mothers from jail all over this country,
hundreds, if not thousands of women at the local level, local organizations
raised the funds through the national
messaging of Black Lives Matter and they literally went and paid
the bonds and bails of women — mothers, sitting
in jails for fines for which they shouldn’t
be sitting in jail except for the fact they
couldn’t afford the bond. So if you gave money, there
were women who were home on Mother’s Day because of you. So thank you for that. Sorry about that. That’s how they can textualze
it and become relevant. That’s how they become relevant.>>Well my parting words is I
would like to thank everyone, CDC, Tuskegee and each
and every one of you for having the opportunity for
me to be part of this panel. But deeply, I want to thank
each and every one of you for the work that you do. And I guess I want to give you
a call to action to dig deeper, dig deeper, dig wider
in your commitment to the work that you do. And I’m just going to quote
a male, George Bernard Shaw. And I — I feel this and I truly
think about this: “The true joy in life is being
used for a purposed, recognized by yourself
as a mighty one.” So it comes from us –>>Thank you.>>– and we give,
but it comes from us.>>Yes.>>Thank you.>>So — so I’ll just end again. Thank you — Great to
be part of the panel. I — I leave you with a thought
or a question of what part of the problem do you own? And then what action
can you take?>>Yes.>>That is so hard to
follow, this panel. It’s an honor to be part
of this conversation. Maybe we should do a radio
show together or something.>>Thursdays at 6PM Eastern
time, 89.3 FM and on the web. We stream live.>>So it’s — The
parting words are to think about cultural context
in more complex ways. I think situated knowledge is
in the context of power dynamics and the relationality of that. And then lastly is, you
know, well not lastly, but it’s the unconscious bias. What do we carry in our
situated knowledges? Situation knowledge isn’t
just about marginalized under resource population. It’s about those in
dominant positions of power. The quick plug is I had
suggested some readings, and they’re on the CDC
website and they’re examples of the things that were — we
have been talking about here. And there are — My colleagues
have suggested readings as well. The last thing I’d
say is, you know, to your great question — mental wellness and mental illnesses drawing from
Tenojan [Assumed Spelling] who is known as a theologian, but also his work
during the Vietnam War in Vietnam was really public
health and social work. And we must heal ourselves
in order to heal others. So to center that balance and I
think that’s part of our task, our call and our hope for
everyone is that we have peace in ourselves, that we
have peace in others.>>Wow. And I just want
to thank this panel. Please give them a
round of applause. Thank you for your
comments and questions. And I also — I just want to
acknowledge and be grateful. Intersectionality is a word
that we have been working with in the Women’s
Reproductive Justice Movement for two decades. And we want to acknowledge that intersectionality is
term that’s coined and defined by none other than
Professor Kimberly Crenshaw, world renowned human
rights attorney. And I just want to
acknowledge and thank the CDC, because intersectionality
has arrived at the Centers for
Disease Control. Thank you. [ Applause ]>>So without further ado, we’re
going to ask Dr. Liburd to come and introduce our
closing plenary speaker.>>So what a full and powerful
and rich day that we’ve had. I’m just excited
about everything that I’ve heard today. I was tapping my foot through
all of the presentations and I want to thank
everybody who is still here, hanging in here to get us through the rest of
our journey today. And I am very, very
pleased and honored to introduce our closing keynote
speaker, Dr. Melanie Nadeau. Melanie is an enrolled citizen
of the Turtle Mountain Band of Chippewa in Belcourt,
North Dakota, so she traveled all the way from North Dakota
to be with us today. She graduated from both the
Turtle Mountain Community High School and the Turtle
Mountain Community College. She received her undergraduate
degree in Psychology from the University of
North Dakota and a Master’s in Public Health in
Community Health Education with a concentration
in health disparities from the University
of Minnesota. She recently completed
her PhD in Epidemiology in the Social Behavioral Track
Program at the University of Minnesota School
of Public Health. She is a community-engaged
scholar and has worked 13 years on various research projects within the American
Indian community. There’s a lot more that I
can say about Dr. Nadeau, but I want to end by
saying that she has a wealth of experience working in
community health education and research and is dedicated
to improving the health and well-being of
Native communities. She has been married for 24
years and has one daughter. And in her free time, I
don’t when that is, right, she enjoys attending
cultural events and hosting cook-outs
with her family. So please join me in
welcoming Dr. Nadeau. [ Applause ]>>Thank you so much. And thank you for having me. I’m so excited to be here. It’s been just great listening
to everybody’s thoughts. And before I get started, let’s
see how do I bring this up here? Can I just escape
out of this here? Okay. Okay. So before I get started,
I just kind of want to reflect on the — the summaries
that were given and just share some
of my thoughts. Health literacy seems
to be a big issue, you know in talking just from
my community perspective. I try to relay to individuals
that are working in community, that come into community
and that want to translate information back to
the community, which is a step that unfortunately gets
skipped a lot of times, and that’s probably the
most important step. But when you’re looking
at health literacy across the nation, you’re
going to see a second or third grade level of
health literacy on average. So depending on what
community you’re working in, it could be a little higher
or a little lower than that. And so it’s really
important that we’re mindful of when we’re translating
these resources who we’re trying to target. Also, you know just thinking
about cultural adaptation, cultural adaptation of —
of current best practices, current interventions, current
resources, you know, it’s — it’s — We don’t
really necessarily need to recreate the wheel here. I mean, if we bring these
resources community, a lot of times, you know,
people sit down and — and put their own spin
on it, and you’ll end up with a great product. So I think that there’s —
there’s a lot of opportunity in that — that realm. Another thing is that
with digital storytelling, that’s something that’s,
like, hot on my — in my arena right now. I think that, you know,
when you’re working with community members and
having them share their stories, people relate to people
that are like them. So when you’re having
someone share or you’re trying to change what’s currently
going on in the community, having people that — that the
target audience can relate to, it’s very important. And digital story is — Storytelling is a very powerful
way to do that, and at the close of today, I’ll share
briefly a — a little digital story
with you that I did on why I pursued public health. Community engagement — I
mean, all of these things. I think we’re all on
the same page here. You know these community
engagement — I think we all understand
the importance of that. The — But with the — the messaging, the
social media messaging, I think that it’s
also equally important to calendar the bad
messages that are out there, to take the time to actually
counter those publicly, because somebody said
when I was in school, working on my Master’s way
back then that the impact of a bad message, it can take,
like, ten years just to remove that impact of that
bad messaging. So and how much of our efforts
are actually going towards “rebuttling” these things that are out there that are true. And I think too, you
know, American — especially with American
Indian data, the data is really
weak right now. There’s just really
poor data out there for American Indians, you know. They’re — You cant say there’s
really good data out there. It’s pretty bad actually. And so, you know, but
you use what you can. And — But I think that
when we’re presenting things that we really need
to stop and — and share with our audience the
strengths and the limitations of that data that we’re sharing
so that you can say, hey, this is really crappy data, but,
you know, I want you to be able to make an informed
decision on whether or not you want to
use this data. And I — I — I don’t
see that happening a lot, and I think that, you
know, as educators, we need to take the time to
share that with the community. And the other thing that I didn’t hear
mentioned here today, but I think is a huge issue from my community perspective
is financial literacy. You know, I’m a — I’m first
generation college student. I still don’t know
how to handle money. I come from a poor family,
you know, so — And how — how does that impact
one’s health? How does that impact
one’s financial ability? How does that impact one’s
ability to stay in school? And, you know, I know
I’m not the only one. And so, you know, I think that
when we’re talking about health and improving the health of
our communities that, you know, I think something could come from increasing the
financial literacy of our — our communities. Talking about community-based
participatory research, I’m — I’m a trained community-based
participatory researcher. I’ve done a couple of
projects in that arena. I think it’s also
important to — We talk about it
about as a approach, you know, or an approach. It’s not an approach. There’s a lot of approaches to community-based
participatory research. There’s so many people
put their own spin on it. There’s different ways of doing
it, and so it really depends on which — whose approach
you’re following or whose — whose literature that you’re — that you’re using to drive
your community-based approach if you will. But at the end of
the day, it should be in community informed
approach, right. And the other thing is that there’s also a
reality-based approach, and that’s — that is something that was created
by John Poupart. He’s from the American Indian
Community and you know, really focuses on the voice
and storytelling of community. So that’s another
approach to be mindful of. And then, you know,
the importance of engaging our communities
and the evaluation and the — the creation of our
assessment tools. So, you know, everybody wants
to take this tool and say, hey, it’s already been created. It’s — it’s — its’
evidence-based. I don’t have to do anything. I just got to go give
it to my community. Wrong. That’s not a
good approach to do. And I’ll just offer
up a simple example. When looking at — I worked on
a tobacco project for a number of years, and when looking
at knowledge, you know, our knowledge question or
saying, you know bringing in these cultural speakers
around tobacco and saying, okay, now you know everything
about tobacco from a cultural perspective. You know the — the
positives and the healing of the medicine of tobacco. Now are you going to turn around and share this with
your community? And we got the same
answers, “No, I’m not going to pre and post.” Well, was that a
knowledge issue? No. It was a cultural issue because those people weren’t
the people that were recognized in the community as the ones that should be sharing
that information. So you have to be, you know,
mindful of those things so it’s not necessarily a
question that’s going to get at the answer that
you’re looking for. And then the opioid epidemic — I recently attended a Harm
Reduction Summit, and, you know, it’s an epidemic
all over the place, on our tribal lands as well. And, you know, one of the things
that I think that we really need to get an understanding on just from a personal perspective
is the policy differences and the intervention
differences and what we can do as individuals, as — You know,
because clinical people can, you know, help someone that’s
had an overdose, you know, but I can’t, well at least
in the state of North Dakota, but I can in the
state of Minnesota. So, like, understanding the
differences, you know, what — what are your — what
are you limitations? What are you able to do? Depending on state to
state, learning from state to state differences,
but also looking at state to tribal differences and, like,
how does that impact the work that we’re doing
at a policy level? And then to reflect
on the students, one of the student poster’s
breast cancer, you know, risk factors, I actually did — That’s what I just did
my dissertation on. And, you know, as a
community engaged scholar, I picked something
in my community. I did a case control
study in my community. It was over 400 people. In my sample, I reviewed,
you know, medical records, radiology records
all the way back. My first — my first
patient and my thing was — sample was born in 1901. But at the end of the
day, what did I find out? I did this case control
study as a graduate student. That’s, like, unheard of. It’s kind of crazy, you know,
like what are you doing? But I learned a lot working
with an Indian Health Service. I learned a lot about, you
know, how I could use data. And I had a community-driven
project, and at the end of the day, I found out
that this breast cancer risk calculator that is available on the National Cancer Institute
site that providers used to inform their patients
of their risk of breast cancer isn’t
relevant in my community because the risks — those aren’t the risk
factors in my community. So I think that, you know,
just not always assuming that those risk factors
are the same in the — in the communities
that you’re — that you’re working in and that
things can change depending on where you’re at. So that’s kind of my reflection
on all of your reflections. So, I’ll go ahead
and get started. Today, I’m just going
to talk to you briefly. I’m going to try
to make it quick about research considerations
and tribal communities, sovereignty ethics
and data sharing. And, you know, I always
start out by talking about where I’m from,
who my parents are. These are my parents. My mom is Shirley BlackEyes
Belgard. My dad’s Raphael Jack Nadeau. Seems like on the
Indian country there, you always end up
with a nickname. Somebody — Everybody goes
by their — a different name. They’re both from the
Turtle Mountain Band of Chippewa Indians. It’s one of many tribes
in the United States. As of January 2012, there’s
actually 567 federally recognized tribes. And there — In 2010, there
were 324 federally recognized American-Indian reservations. So we’re talking about a lot
of different people here. And the — the thing that,
you know, we need to stop and realize is that all these
people are very different in culture language. And like I try to tell people, American Indians represent
the smallest population in the United States. We’re about two percent
right now, but we represent the biggest
diversity on this continent. Here’s a picture of my dad. And this is actually my
favorite picture of my dad. Here’s he’s sitting in
front of a relocation sign. And relocation was and
effort by the government to get natives off of the — of their reservation out
into mainstream society and to basically incorporate
them into mainstream society. So, because of relocation
efforts, there’s a lot of people that ended up being
urban natives, urban Indian population. And there’s different numbers
depending on where you’re at geographically,
but about half of — about half of natives
on average are — are in the urban community. And my — my dad, you know, he went out on this
relocation program, and I mean, he was just, you
know, just barely — He just got out of the Army. He went — he went and
served in the Army. Then when he got home, he
realized there was this program, so he went down to the
bureau of Indian Affairs. And he went out to California,
and I’m like, wow, you know. He was 21-years-old. He got a one-way ticket to California all the
way from North Dakota. He didn’t know where
he was going, didn’t know what he
was going to, you know, what was at the other end. But, I mean, talk about
brave, what a brave individual to do something like that. And but, you know, there
was nothing, you know — I was like, dad,
why did you do that? He’s like, because
there was nothing. There was nothing, you know. I didn’t have anything at home. I didn’t have anything
to go home to.” You know, so we’re talking about
poverty, education, you know, employment, no jobs, no — no — We didn’t have our
tribal college back in that day, you know. My — my dad said they
lived way out in the bush. You know, they didn’t
have running water. They didn’t have electricity. They went to town, and
you know, they were lucky if they had a car
that ran, you know. So — so definitely dealing with
some demographic challenges. And my parents, you
know, I never really got to see them together
because they divorced when I was 2-years-old and
my — my mother and my — my siblings and I — Well I actually stayed at
my dad’s unit I was seven. But unfortunately, he end
up having a heart attack and also we had to go
back to the reservation and he, he, had diabetes. And this is his mid-30s. He was a — you know,
he was in his mid-30s. And so, we had to go
back to the reservation so he could have access
to Indian Health Service. And so that changed everything. So, this is the first
time that I was, like, exposed to that level of
poverty on the community level. You know I come from the
city, and then all of sudden, I’m sitting there on the reds,
you know, on the reservation, you know, so it’s
kind of shocking. So, you know, here’s some,
you know, numbers for you. The one’s little
dated, buy I’m you know, sure they’re still
pretty much the same. It’s that coronary heart
disease, well northern plains — This specific to
the northern plains. We’re more likely to
report being diagnosed with coronary heart disease
and have a heart attack. And then the American
Indian/Alaskan Native adults are also twice as likely as whites
to be diagnosed with diabetes and women were 2.3
times more likely than non-Hispanic whites
to die of diabetes. So, a lot of disparities there. And we have — This is
our Indian Health Service, and we do have a
beautiful facility. But we, you know, we do have
challenges when we’re talking about intervention and services and what’s available
in the community. And the, you know, the — the dollars that are
allocated per individual for any in-health
service are really low. They’re lower than what’s
advocated for federal prisoners. So, you know, you’re basically
going to get better healthcare if you go to prison
than if you go to IHS. And it’s not because
people are doing a bad job. It’s just that they’re working under a very stressed,
underfunded system. So what does that do
to addressing issues? So here’s a picture of me when
I was in the third grade and, you know, they say that
this is the age, you know, that kids really start
thinking about what they want to be when they grow up. And I knew, like,
when I was a kid. I’m like want to help my people. I want to make a difference. Like, I want to do
something about this, because I could see
what was going on. And, you know, I grew
up with all this stuff, so I have a very personal
connection to what’s, you know, what — It’s more than just
a statistic, put it that way. And you know, here’s
some numbers for you, American Indians/Alaskan Natives
die at a higher rate, you know, from chronic liver disease,
unintentional injuries, assault, homicide, intentional
self-harm, suicide, chronic lower respiratory
diseases. We’re also dealing
with social challenges, violence trauma and loss. So looking at injuries,
accidents, suicide, homicide firearms. Then, eventually, I’d go onto
graduate from high school and I was a first
generation high school and — You know, it’s a little odd to
put that in your bio, you know, that graduated from the Turtle
Mountain Community High School, right. But I’m really proud of
the fact that I graduated from a tribal college and
I’m really proud of the fact that I graduated from
a tribal high school. And I think that that’s
a — actually for me, it ended up being a good thing. It kept me grounded
to — to my community. And so as a — as a first
generation college student, I had a lot of things that —
that I’d end up having to face, and you know, just talking
about educational disparities, the graduation rate, you know, American Indians you’re
looking at 82 percent whites. You’re looking at 94 percent, so there’s a huge
educational disparity, be K through 12 for graduating. And then during my — my school
years, I started a family. During my undergraduate school
years, I started a family. And, you know, unfortunately
one of the things and I’m not the only one,
but, you know, with the — with students that come from
communities that are impacted by a lot of stress
socially, you’d — you have to deal with that. Like, there’s a lot of death. I’ve been going to funerals
since I can remember, you know, and it’s the life that I live. In fact, my brother-in-law
passed away last week. You know, so it’s just like then
two days later, I’m graduating. You know what I mean? So it’s like this — It’s
just like you’re always — you’re always operating
in crisis mode, you know. It’s — It almost
becomes second nature. But, this was the one
that impacted me the most. My mother, she passed
away from cancer. I took care of her until
the day she passed. And this at the point
when my life took a — a totally different direction. I was like, do I really
want to be a doctor, you know, a medical doctor? And this is what — this is
where I change my mind and ended up going into public health. So, you know, some
stats for you. Death rate for malignant cancers for American Indian/Alaskan
Native persons, it’s 338 per 100,000 compared
to 220 — 223.4 for whites. Here’s our college. So, I was very fortunate when
I moved back to the reservation to regain financial stability
after my mom passed that — that I had a tribal
college here to attend. And this is actually where I
discovered my first mentor. I ended up taking
a Genetics class with Dr. Lyle Best. And he graduated at —
I mean not graduated. He retired as a clinician,
medical doctor in my community at the Indian Health Service, and he was actually the
medical director at one point. And he’s not native
but he’s is — he was very vested
in our community and he actually got a — a
grant to conduct a genetics in preeclampsia study with
the women in our community. And it was really good because
it wasn’t community-based participatory research because
the community did not pick the topic, you know. So now, at, like, the center
that I run, we’re moving to the point to where we’re
trying to work with tribes to create — to create agendas
— health — you know, what — what do they want to address? So research agendas and so that
you can match the researcher with the research agenda so that
it’s more meaningful partnership instead of the researcher
coming in and say, ” Hey I want to do this,” and it doesn’t
make sense to the community. So — But, aside from the
community not picking the topic, a lot of the components of his project had
community-based participatory research characteristics. And just to name a few is
building infrastructure at the college so that we
could do genetic research, working with elders
in the community, translating information at multiple levels
of the community. So he did a lot of
things like that. So — And here’s some statistics
that I wanted to share. And, you know, one of things,
like if you look at, you know, our community graduation rates
compared to national rates, we’re not doing as well, right. But the when you break it down, and this is specific
to my community. It’d be totally different
for another native community. But for my community
what we’re seeing is that our men are
not doing very well. Like, so when you start
breaking those statistics out, you know, our men are sicker. Our men are, you
know, not graduating at the — the higher rate. And so when we talk about
wellness of women and children, you know, I — We need our men. We need our men to be well. We need our men to be
brought to the table. And I hear that a lot in the
community, you know, with the — with the community efforts that we work visiting
with the tribes. So, but the Tribal College is where I started my
research journey. And the first thing I heard is,
we’ve been researched to death. And I’m sure everyone’s
heard that one before. And some of the, you
know, concerns are that the results aren’t
interpreted in a language or formats that —
that are appropriate and we talked about that. You know, coming
in the community, there’s a lot of work. I sit on the Turtle
Mountain Band at Chippewa Indian’s Research
Review Board, and in that role, you know, people will come
and propose research to us. And, it’s like have you talked
to anybody in the community? Have you — have you
brought letters of support, like you have a great idea,
but is it — is it feasible? Oh, we didn’t do that. Well, okay. Somebody goes over to Mental
Health and Mental Health, oh, no, we don’t — we
can’t, you know, we’re working in crisis mode. We barely have any — enough
staff to see our patients. Let’s do a project on the side. So and that doesn’t
always happen, but it’s just being mindful of,
you know, what’s currently going on in the community
history demographics, the history of research in a
particular community, cultural, traditional versus
nontraditional, the etiquette, you know, just encouraging
the community involvement, be prepared for possible
community consent. With our board, we
actually review everything, so even if it’s not
research, we review it. We review everything coming
into the community because it — We’re — You know, we’re at
a point to where and maybe that won’t always be so, but
we’re at a point to where it’s like how do you sit there and make an informed
decision whether or not something’s research or
not if you didn’t review it? And then just raising that
awareness about what’s going on, hiring, you know, people from
the community to actually to do the work, respecting
community protocols. And you know just — just really
— just taking a minute to say, you know, community
considerations are not always the same as individual academic
research considerations. They’re — they’re different. So one example I could give
is up in Alaska, there — there were so many
communities that were selected. It was randomized clinical
trial from my understanding. I really don’t know
the work that well, just so, forgive me for that. But, so they — they selected so
many American Indian communities to get the TB vaccine that they
were testing, and they selected so many to not get it. And my community
was a control group. Well, I ran into
a lady in Alaska. She was a descendant from
someone from her community and that — they were
— they were actually — they actually got
the — the vaccine. So — But what —
what went wrong there? Well what went wrong is the
vaccine was very successful, but then it wasn’t turned around
and administered community wide. So then the community
was pissed off. See, so did the researchers
do anything wrong from their standpoint? No, not necessarily
because they were operating from an individual academic
perspective, you know. But the — From a community
perspective, that was wrong. So, you know just — just
taking the time to — to realize that those things
don’t always align and the when you’re working on a
community level that — that doesn’t, you know,
that those — those — those are things that need to
be taken into consideration. Also, you know, just really
taking the time to say, did we get it right
with publications, presentations, results. Everything that I do goes through my community before
I publicly talk about it. So, it’s just a good — it’s
just a good way to be anyway. And then, you know, just
talking about from the — my standpoint as a student,
as doctoral student, you know, my classmates had
to get an approval from the Institutional
Review Board at the University of Minnesota. Well, since I was working with
my tribe, I had to get approval from the University of Minnesota
Institutional Review Board. I had to get an approval from the Aberdeen Area Indian
Health Service Institutional Review Board, which could’ve
determined that I would’ve had to get a national
one, but they said that I didn’t have
to, so that was good. I didn’t have to
get that extra one. I had to get approval from
the Turtle Mountain Band at Chippewa Research
Review Board. I had to get a resolution
passed with my tribe, and I had to get a Letter of
Accommodation from the CEO of the Indian Health Service. So, it’s kind of different
when you’re working at that level, but it’s good. It’s good. I think it’s — it’s important to have those levels
of approval as well. And you know, just understanding
that it’s important to build these meaningful
relationships, being culturally competent. And this is, l like — This
goes for, like, American Indian to American Indian even,
like, you know, I — I might be competent
with my own people, but that doesn’t
mean I’m competent with the tribe down south. So, if I’m working in that
community, I have, you know — If I want to work in a good way,
then I want to attend anything that I’m welcomed to, you
know, so that I can get to understand the — the ceremonies, the
community activities, the service activities, the
volunteer opportunities, everyday activities
that are occurring in that community as well. And, you know, just really
trusting the community in that they know what they need
and they know how to get it done and they know what it takes to
make their communities healthy. So, when producing projects,
it takes a lot of time — I mean products for American
Indian Tribal audiences, it takes a lot of time. And I’ll use one example. There’s organization
that approached my center and they said, we
want to make sure that our materials are
culturally competent. I’m like, okay. And so they brought them in,
and my team, we do everything on a team-based approach. And so we — we make
decisions as a consensus because that’s a traditional
way of doing that in our region and so we don’t move forward on
anything unless we all agree. And so when reviewing these
materials we were, you know, kind of laughing because it
was not one of those pictures of those individuals on these
materials, like, looked — They weren’t from out area. They were, like, from different
tribes, you know what I mean? And it’s like no,
no, no, no, no, no. So then they went back
to the drawing board, and they came back again, and I think the second
rendition was worse than the first one, you know. So I was like, oh my gosh. So anyway, so now they’re
going to have a campaign to do some pictures from people
from our communities to include in their cancer resources. So it’s like, yes, that’s
the way it should be. So, incorporating
the local knowledge and traditional knowledge
is very important. And I’m not sure how
I’m doing on time here. But anybody have — idea
how much time I have left? Five minutes? Okay. So, yeah just take — taking the time to
do things right. And then we talked about community-based
participatory research. So, you know, just talking — And I touched on some
of these things already. Research in American
Indian community is so — A lot of, you know,
from my community, our board’s only been, you
know, in existence for a couple of years now, you know. So we’re learning a lot through
the process of having our board and just making sure that — that we’re regulating the
projects that are coming in, reviewing everything, using
a checklist to make sure that the — the — that
everything’s in compliance, passed and resolutions
with the tribe, that our team possesses the
professional qualifications that required, you know. And we do that because we —
we — we — we videoconference, so we’re able to meet. So it’s not like people
have to be in community. You know, so just taking
advantage of technology in order to make these things
happen especially in rural communities is —
is a very good way to go. Tribal possession of the
data is very important to prevent misuse. And I haven’t come across where
they said, no you can’t use it. It’s just mainly just being
a good, you know, being — just informing — informing the
community what you’re doing. And you actually end up getting
some really good advice on — on how to move forward, so
it works out pretty good. So, yeah, and, you know, just from American Indian
community perspective, just making sure that you
know who the researcher is, what research they have
done, why do they want to do research in
your community? You know, we have
people approaching us from all the way
across the country. Why? Why do you want
to do research? It might be a very good reason. But why are you want — Why do
you want to come all the way over here and do
research right here? And does that — and does
your reason, you know, make sense for our community? And is it going to
benefit our community? So and a lot of these
are reciprocal in nature, but you know, just — just —
just being informed basically of the research and making sure that the researcher’s reporting
back and reporting to community, not only reporting back,
reporting out to community and translating that
information at multiple levels so that it’s actually
useful to the community. And they can take that
information and use it in reports, use it in grant
writing, etcetera or use it for social, you know,
to change social norms. And then, you know, asking them, do you want to be identified
in this publication? Some tribes don’t want to be. Some tribes say, yeah, of
course we want to be recognized for the — the work that we
contribute too so, you know, that’s another consideration. So — so in conclusion, the
best way for American Indians to ensure that they’re
not harmed by and benefit to the greatest extent
from the research is to be involved throughout, and I’d say this is
true for any community. And this is a picture
of our elder’s group. They actually overseen our
project at the Tribal College and it was really
— really good. And, you know, I
think nothing that — Probably stayed home
with me the most is that once they were done, they
went into lab, they learned how to pipet and do genetic
analysis. They listened to our
spiel, all that good stuff. But then they turn around
and they said, okay, we want you to talk
to us about cancer. We want you to talk
to us about diabetes. We want you to talk to — we want you to explain to us
what fragile X syndrome means. So, you know, and
realizing that the work that you do is not
only about you. You become a resource to those
individuals in the community and that you’re expected
to step up and fill that role even though it might
not even have anything to do with the work that you’re doing. And then I’m just
going to finish by playing this little
video for you that I — that I created on why I
chose public healthcare. [ Tribal Singing ] Here’s a picture of
me in the third grade. At this age, I started thinking about what I wanted
to be when I grew up. This is a picture of my Uncle
Benny, dad, mom and Uncle James. My Uncle Benny died from
an unintentional injury, my mom from cancer and my
dad lives with diabetes. Both of my grandparents
passed away from cancer. My Uncle Beatty and his
daughter, Ivy, were shot and killed by the same bullet. My Uncle Edward passed
away from cancer. Eventually, I would
go onto college as a first generation
college student. Experiencing all of
this loss motivated me to pursue a health career. My Uncle Bernard passed away
from an aneurysm, my cousin, Bernard Junior passed
away from cancer. My stepfather passed away
from an unknown cause. My Uncle Francis
died of asphyxiation. Right before I graduated
with my Master’s degree in Public Health, my father
had a toe/partial foot and a below the knee
amputation due to his diabetes. I’m happy to report that
it’s been four years since his amputation. His first prosthetic leg says
a lot about his personality. It has lightning bolts on it. The fall of 2010, I entered into
the PhD and Epidemiology Program in Social Behavioral Health. [ Tribal Singing ] Well thank you. [ Applause ]>>So let’s give Shauna
a round of applause. [ Applause ] Yeah, we — I just want
to say in conclusion of a wonderful day, we
started out at the beginning of this year to pull
together this forum, and I couldn’t be more pleased
with how the day has turned out. We have been challenged
on many fronts over the last several months,
but we came in this morning with smiles on our faces,
because we saw all of you here. And so I just want to thank you. I want to thank all of our
speakers, our facilitators, everybody who participated
in today’s program. And I hope that you will carry
what you heard today both with you and your heart
and in your minds. And consider it seeds planted
that we are looking to water and then to see a great harvest,
so thank you for being here. [ Applause ]>>The thanks go far and
wide from my context, but start with Dr.
Liburd and Dr. Tucker. I think you need to know
that coming together of these two issues in — in times such as
these was phenomenal. And they made a commitment to make it happen
and it’s happened. So I want to publicly
thank both of them. [ Applause ] And the partnership and I’m
intentional about talking about the difference between
relationship and partnership. The partnership that
we’re enjoying and growing with the Centers for Disease
Control and Prevention is — it’s a work in progress that
requires attention every day. And Jo Valentine gives
it attention every day, and I want to thank her as well. [ Applause ] And then you’ve heard the — the
cliche the media is the message, and there’s — there’s
been one message — message bearer for the
National Center for Bioethics and Research and
Healthcare, because so much of what you hear is not true. So much of what you
see is not true. So much of what you’ve
heard is just wrong. And I wanted to thank Dr.
Joan Harrell for assuring that the message that
you’re hearing about, these events is true, is
correct and is consistent. Dr. Harrell, thank
you so very much. [ Applause ] And I’m not going to take
any more time thanking folk. I just want to thank y’all. But the issue for me is about
women not mother, grandmother, wife, daughter, granddaughter,
aunt, uncle, not uncle. I got caught up. But it’s — it’s not about
the social role of women. You know, I — I — I
don’t know the right words, so I won’t use it. I know the right word. I won’t use it, but
maternal child health. I’ve been working in
public health for many years and I’ve shuddered when I
hear maternal and child health as if women are connected
to mothers only. And we were intentional
about listening as I started off talking
this morning, and — and this forum was
about women and girls, not their social role,
just to be a woman and to be girl is
what this forum was about for her whole life. So I wanted to thank
you all for listening and hearing I hope about women. And the office, let me
get the office right, Public Health Ethics at
CDC is really important. It’s a courageous step to say that Public Health Ethics
is different than Bioethics. It’s important paradigm shift
that’s still in progress and I think the, both leadership
in that office is really — Drue Barret, [inaudible] have done an outstanding job in making a distinct difference
not good or bad, but different. And as public health ethics
grows, you’ll learn more and more about that difference
and appreciate it I hope. So I want to thank you two
particularly for your courage to bring this new
paradigm into fruition. [ Applause ] And last and most
importantly from my context and a historical context, I want
to thank Booker T. Washington for his courage and
wisdom and vision to say that we all ain’t the same. And — and that’s okay. But we’re all equally as
important, and that’s okay. And his courage to
say something then that many times we don’t have
the courage to say now is that we need to target those
who are in greatest need with all of our resources. He’s done that and — and
you see the results of that. And again, minority
health month started with Booker T. Washington. And I want to thank you all
for having the courage to say that loud and clear for
those who didn’t know. And now they don’t even have
to say they didn’t know. All they can say now is
Minority Health Month started with Booker T. Washington
Negro Health Week. So as we close, and
lastly you know, what we said two years ago. This is an annual event. And unfortunately we have so
many vulnerable populations, so we don’t have a problem
with figuring out who to target because a vulnerable
populations continue to grow. So I look forward to the day
when we won’t have to talk about public health ethics
and target populations, because ethical issues will
be applicable to everybody. And they won’t be equal. They’ll be equitable and I hope
now you know the difference. Thank you so much and we’ll see
you this time or soon next year.

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