Achieving Momentum in Ethical Health Policy: Method & Opportunities

Transcript

• 00:22Thank you. So we're on.
• 00:23We're live. We're all back
• 00:24this time. Thanks. Thank you.
• 00:27Good seeing
• 00:39you. Good evening.
• 00:42Well, we're back.
• 00:44The program for biomedical ethics
• 00:46and the Yale Pediatric Ethics
• 00:48program.
• 00:49Welcome back to and, Jill,
• 00:51if you this is your
• 00:51first time, welcome,
• 00:53to the program. We've got
• 00:54a wonderful,
• 00:56a wonderful, eclectic collection of
• 00:57people who always come to
• 00:58these things, faculty, you know,
• 00:59hospital staff, people from other,
• 01:02people from other hospitals, folks
• 01:03in the main campus, folks
• 01:04in the community, and we've
• 01:05got some students. And in
• 01:06particular, we've got some first
• 01:07year students, I think, who've
• 01:09who've made an appearance. Yeah.
• 01:10Oh, yeah. Alright. Good. So
• 01:11I noticed you guys you
• 01:12guys aren't really officially in
• 01:14the concentration yet. We gotta
• 01:15wait and see how many
• 01:15people sign up, figure out
• 01:16what we're gonna do. In
• 01:17the meantime, the students all
• 01:19know you should sign up,
• 01:19including the first year students
• 01:21just and we'll do that.
• 01:22And even if, you know,
• 01:23even whatever
• 01:24you know, if you're as
• 01:25you're leaving, if you see
• 01:26there's still any sandwich boxes
• 01:27over there, do me a
• 01:28favor. Just take them, will
• 01:29you?
• 01:30Make sure you get a
• 01:31sandwich out of the deal.
• 01:32So what we try and
• 01:33do in these sessions, as
• 01:34many of you know, is
• 01:35we bring in, you know,
• 01:36someone who is a leader
• 01:37in a field related to
• 01:39an interesting ethical question. But
• 01:40we didn't do that tonight.
• 01:41Instead, we brought you two.
• 01:43We have two wonderful speakers
• 01:45tonight, and I wanna introduce
• 01:46them to you in a
• 01:47moment. But first, a couple
• 01:49of quick announcements.
• 01:51One is to to jump
• 01:52ahead to our next session,
• 01:54which is in two weeks,
• 01:55but it's on Tuesday instead
• 01:56of Wednesday. We usually do
• 01:57this on Wednesday nights. But
• 01:58Tuesday, the thirtieth. Right? Tuesday,
• 02:01the thirtieth, doctor Ben Tolchin,
• 02:02who is the head of
• 02:03the ethics center at the
• 02:04for the health system
• 02:06and,
• 02:06is soon to be the,
• 02:08the interim co director of
• 02:09our program here. Ben is
• 02:11gonna be speaking to us
• 02:12about a a fascinating public
• 02:14health,
• 02:15versus autonomy,
• 02:17ethical issue as well as
• 02:18a very practical issue relying
• 02:19to when people's driving
• 02:21rights are restricted
• 02:23based on, based on neurologic
• 02:25issues, based on age. It
• 02:26could be a number of
• 02:26things, but but Ben's gonna
• 02:28talk to us about that
• 02:28in a couple weeks here.
• 02:30So we look forward to
• 02:30that session.
• 02:32But I wanna talk to
• 02:32you,
• 02:33a bit about tonight's session.
• 02:35So we're gonna talk about
• 02:36achieving momentum in ethical health
• 02:38policy. We have two people
• 02:39who know,
• 02:40much about this, and I'll
• 02:41talk about each of them
• 02:42individually. But to let you
• 02:44know how it's going to
• 02:45go, first, Meredith McNamara. Doctor
• 02:46McNamara is gonna speak, for
• 02:48about a half hour, and
• 02:49then, doctor Bruce is gonna
• 02:51speak for about a half
• 02:52an hour. Lori is gonna
• 02:53talk to us.
• 02:54And then we'll have some
• 02:55time at the end for
• 02:56questions and comments.
• 02:59Please, if you will, hold
• 03:01your questions and comments until
• 03:02after they're done, and we'll
• 03:03moderate a session. Someone will
• 03:04be there with a microphone.
• 03:06If I do indicate you,
• 03:07call on you, please wait
• 03:08just a second until someone
• 03:10brings you a microphone so
• 03:11that the folks who are
• 03:12on Zoom can hear you
• 03:13as well as the folks
• 03:14in the room, particularly those
• 03:15of us who work harder
• 03:16at hearing than others. We'll
• 03:17all be able to hear
• 03:18what you have to say
• 03:19if you're using the mic.
• 03:20So let's talk about,
• 03:22tonight's session. Oh, to let
• 03:23you know, at the end
• 03:24of that session, by the
• 03:24way, as always, at six
• 03:26thirty, we will stop. So
• 03:27I apologize to the person
• 03:29who was just about to
• 03:29ask the most important question
• 03:30of the night. You can
• 03:32just send an email to
• 03:33Meredith or Laurie and ask
• 03:34them the question because we're
• 03:35pulling the plug at six
• 03:36thirty. But it's gonna be
• 03:37a great time in the
• 03:38meantime.
• 03:39So let's get to it.
• 03:41So our speakers tonight, doctor
• 03:43Meredith McNamara
• 03:44is an assistant professor of
• 03:45pediatrics and a specialist in
• 03:47adolescent medicine right here at
• 03:48Yale. She's co director of
• 03:50the Integrity Project for Child
• 03:51and Adolescent Health. Okay? She,
• 03:54works on multi multidisciplinary
• 03:56collaborations,
• 03:57and you may have heard
• 03:58of her or read about
• 04:00her or heard some of
• 04:01her work. She does work
• 04:02on amicus briefs and other
• 04:04expert testimony
• 04:05on important issues, original research
• 04:07and media engagement.
• 04:08She supported nationwide efforts to
• 04:10optimize health policy for youth,
• 04:12particularly in the areas of
• 04:13gender affirming care and HIV
• 04:16prevention.
• 04:17Meredith received a doctor of
• 04:18medicine and a master of
• 04:20clinical research from Emory. She
• 04:22completed her residency in pediatrics
• 04:23at the University of Chicago
• 04:25and a fellowship in primary
• 04:26care,
• 04:27from the leadership in urban
• 04:28primary care education and transformation
• 04:31program. That's a long ass
• 04:32name for a program.
• 04:34Also at the University of
• 04:35Chicago, she did a fellowship
• 04:36in adolescent medicine at the
• 04:38University of Illinois in Chicago.
• 04:40So we're delighted that you're
• 04:41here with us tonight, Meredith.
• 04:42And after, doctor McNamara speaks,
• 04:44we'll hear from doctor Laurie
• 04:46Bruce
• 04:46who is I'm just reading
• 04:48this because this is relatively
• 04:49new news. She is a
• 04:50research scientist also at the
• 04:52ISPS.
• 04:53Right? Where'd Laurie go? She's
• 04:54over here somewhere.
• 04:55Laurie's been a, she's the
• 04:57associate director of the program
• 04:58over on the main campus,
• 04:59and I think that many
• 05:00of you know Laurie because
• 05:01she's been part of our
• 05:02efforts here for for many
• 05:03years and so I'm delighted
• 05:04that she's here with us
• 05:05tonight. She's the associate director
• 05:07of the interdisciplinary center for
• 05:08bioethics on the main campus
• 05:10and of course, she directs
• 05:11that wonderful summer program which
• 05:13is actually known internationally and
• 05:15draws students from all over
• 05:16the world. It's marvelous.
• 05:18She's a she's co director
• 05:19of the Connecticut,
• 05:20ethics consultant, the ethics chairperson's
• 05:23breeding group, for the,
• 05:26for the these are the
• 05:26leaders, all health care ethics
• 05:28committees,
• 05:29leaders, chairs from all over
• 05:31the state get together at
• 05:31Connecticut Hospital Association, and Laurie
• 05:33leads that group.
• 05:35She served as a contributing
• 05:36editor for a Hastings Center,
• 05:38report. She has worked on
• 05:40a number of journals, including
• 05:41the Journal of Law Medicine
• 05:42and Ethics and the JME
• 05:44Practical Bioethics.
• 05:46Laura's academic and her policy
• 05:48work has been covered by
• 05:49media outlets and you may
• 05:50have heard or read on
• 05:51some of this, including NBC
• 05:52Nightly News, The New York
• 05:53Times, CNN,
• 05:55and others.
• 05:57She directs the Global Summer
• 05:59Institute in Bioethics,
• 06:01which I just mentioned, which
• 06:02is an absolutely wonderful resource
• 06:03and I mentioned that to
• 06:04the students. Some of you
• 06:05who may have an interest
• 06:06in diving deeper, at some
• 06:08point, think about sending an
• 06:09email to laurie dot bruce
• 06:11or you can reach out
• 06:12to to myself or to
• 06:13Ben or to Jen,
• 06:15or to Sarah,
• 06:17the leaders of the ethics
• 06:18program over here about what
• 06:20Laurie and Steve are running
• 06:21on the main campus. It's
• 06:22absolutely marvelous. I recommend it
• 06:24highly to the students.
• 06:26Anyway, so it looks turns
• 06:27out that
• 06:28Lori went to school too.
• 06:31In particular,
• 06:32she has,
• 06:33she has a bachelor's degree
• 06:35from Carnegie Mellon. She has
• 06:36a master's in bioimaging from
• 06:38Boston University.
• 06:40She has a doctorate in
• 06:42medicine from Loyola. Excuse me.
• 06:43Not a doctorate in medicine,
• 06:44a doctorate in bioethics.
• 06:46A degree I wish I
• 06:47had. I don't, but Laurie
• 06:48does. So we're very fortunate
• 06:50that she's lending her expertise
• 06:51to this question tonight. So
• 06:52true,
• 06:54very,
• 06:55educated people in the area,
• 06:56very important people to our
• 06:58program here at Yale. So
• 06:59we're gonna start with, with
• 07:01doctor Meredith McNamara. Welcome, Meredith.
• 07:06Thanks, Susan.
• 07:11I just have to start
• 07:12with, heaping amounts of gratitude
• 07:14for this audience for coming
• 07:16tonight,
• 07:17for sitting. And I don't
• 07:19take it for granted that
• 07:20I would be,
• 07:21you know, kind of on
• 07:22the earlier side of of
• 07:23my academic career and get
• 07:25to talk to a wonderful
• 07:26group like this.
• 07:28So,
• 07:29also, bear with me because
• 07:31I'm doing a little bit
• 07:32of a
• 07:34tech Tetris right here.
• 07:36I'm gonna I'm gonna do
• 07:37great, though. I just know
• 07:38it.
• 07:41Okay. So,
• 07:42I also wanna take a
• 07:43moment just to thank Mark
• 07:44Mercurio for,
• 07:46inviting me to,
• 07:48participate in this talk, to
• 07:49share this space with you
• 07:50all tonight. And I am
• 07:51deeply grateful because it's one
• 07:53of the last ones that
• 07:54he'll be hosting,
• 07:56in his directorship. So thank
• 07:57you so much for creating
• 07:59this nourishing space for us
• 08:00to have this type of
• 08:00conversation.
• 08:03Mark already told you that
• 08:04this is gonna occur in
• 08:05three parts, me, doctor Bruce,
• 08:07and then we're all gonna
• 08:08talk together.
• 08:10I am going to provide,
• 08:13the insight that comes from
• 08:14my professional experience thus far
• 08:15in adolescent medicine.
• 08:17Doctor Bruce is going to
• 08:18be presenting
• 08:19a
• 08:20much more kind of, like,
• 08:21rigorous and methodological,
• 08:23perspective on how we achieve
• 08:26momentum in health policy, and
• 08:28I'm really excited to hear
• 08:30what insights and questions you
• 08:32all might have. So please
• 08:33do remember them and save
• 08:34them for us.
• 08:36We have some objectives, and
• 08:38I'm gonna,
• 08:39just
• 08:40share them with you very
• 08:41quickly. We are going to
• 08:43explore ethical arguments about policymakers
• 08:45as regulators of health care
• 08:48and explore the ethical dimensions
• 08:49of their responsibilities compared to
• 08:51clinicians,
• 08:53describe evidence informed processes that
• 08:55can be utilized to craft
• 08:56ethically and scientifically sound policy
• 08:59grounded with recent contemporary examples,
• 09:02and consider clinicians'
• 09:03and experts' ability to participate
• 09:06in policy development.
• 09:09Okay.
• 09:10Does,
• 09:12anyone know what a reflexivity
• 09:13statement is or a positionality
• 09:15statement?
• 09:17So this is the,
• 09:19answer to the question,
• 09:21why me?
• 09:22Why this topic?
• 09:24And anybody might have a
• 09:25different answer, but it's important
• 09:27for you to know what
• 09:29mine are.
• 09:30So
• 09:31I am here tonight to
• 09:34express,
• 09:35my professional duty, which I
• 09:37feel to uphold the principles
• 09:39of my work as an
• 09:40adolescent medicine physician.
• 09:42It is a deeply held
• 09:44value in my field that
• 09:46adolescents and young adults are
• 09:48worth investing in,
• 09:50that they're worth investing in
• 09:51with social resources,
• 09:53with time, with respect and
• 09:55adoration, and that when we
• 09:56do so, there is this
• 09:58amazing triple dividend of benefits
• 10:01that ensues.
• 10:02Those
• 10:03dividends include health benefits in
• 10:05the present, health benefits later
• 10:07in adulthood,
• 10:08and the health benefits that
• 10:09they confer on
• 10:11future generations that they rear
• 10:13and support.
• 10:15In expression of that lived
• 10:17commitment
• 10:18are the things that I
• 10:19do and the things that
• 10:20I apply myself to.
• 10:24What I see in the
• 10:25exam room, what I see
• 10:27in the literature, and what
• 10:28I see in my
• 10:31cross disciplinary collaborations
• 10:33with like minded people
• 10:35are areas where adolescents are
• 10:37impacted by health policy that
• 10:39could be optimized to serve
• 10:40them better
• 10:42or
• 10:42is actually doing really great
• 10:44things. I'm very interested in
• 10:46what makes a health policy
• 10:47evidence informed, what makes it
• 10:48align with ethical best practice,
• 10:51or what maybe does not.
• 10:54What I don't have
• 10:56as much is lived experience.
• 10:59I am not really a
• 11:01patient. I'm certainly not a
• 11:03patient in that stage of
• 11:04adolescence. I don't have a
• 11:05marginalized identity.
• 11:07I don't experience resource scarcity
• 11:09in the same ways that
• 11:10my patients do.
• 11:12And I really try to
• 11:14resist the urge
• 11:16to describe their experiences for
• 11:18them instead of them, but
• 11:19sometimes that inadvertently happens. And
• 11:21it's something that I encourage
• 11:23everybody who looks to advocate
• 11:24to think about is how
• 11:25can I
• 11:27amplify somebody else's voice and
• 11:29maybe
• 11:30parse out what's really coming
• 11:32from me? What are assumptions
• 11:33that live in me?
• 11:38So, my sense of what
• 11:40constitutes best practice is informed
• 11:42by scientific evidence that I
• 11:44am trained to engage with.
• 11:46I thought when I got
• 11:47a master's in clinical research
• 11:48as a medical student that
• 11:49I would be a clinical
• 11:50researcher
• 11:51in some specialty of pediatrics
• 11:52for the rest of my
• 11:54career, and I found that
• 11:55where my natural inclinations
• 11:58pointed to was actually in
• 12:00the
• 12:01explanation
• 12:01of basic tenets of clinical
• 12:03research to
• 12:04people who need to understand
• 12:06that because they regulate it.
• 12:08My career experience and policy
• 12:10pertains to areas
• 12:12specifically where scientific evidence may
• 12:14be missing or improperly used.
• 12:16I have testified in litigation,
• 12:20legislative processes. I have helped
• 12:22write and file amicus briefs,
• 12:24public comments
• 12:25that were crafted for policymaking
• 12:27specifically, and I have actively
• 12:29sought
• 12:30and continue to seek the
• 12:31input of people who bear
• 12:32the impact of these policies.
• 12:34And the area of work
• 12:35where this work where this
• 12:37has been,
• 12:38kind of the most necessary
• 12:39in my professional view has
• 12:41been in bans or limitations
• 12:43on youth gender care.
• 12:44To me, from the position
• 12:46that I occupy
• 12:47as a
• 12:50as somebody who feels charged
• 12:52with the well-being of my
• 12:53patients, there is
• 12:56probably no greater need
• 12:59for scientific evidence to be
• 13:00discussed faithfully and accurately and
• 13:02for us to really look
• 13:04at,
• 13:06at what the
• 13:08impacts of policy can be,
• 13:10and to conceptualize
• 13:11policy
• 13:13that invades deeply into medical
• 13:14practice
• 13:16as, a form of medical
• 13:17practice in and of itself.
• 13:19So those are some of
• 13:19the ideas that we're gonna
• 13:21be touching upon today. I
• 13:22don't know if anyone's seen
• 13:23the movie everywhere,
• 13:25everyone, everywhere, all at once,
• 13:27Whatever. That's what this talk
• 13:28is gonna feel like.
• 13:29It's gonna feel like a
• 13:30lot of stuff and not
• 13:32really going too deeply into
• 13:34anything. And I that's that's
• 13:35deliberate because we're supposed to
• 13:36kind of, like,
• 13:38wet our appetites for more,
• 13:40and not leave feeling
• 13:42completely full.
• 13:44Okay. So let's start with
• 13:46a shared definition. I've been
• 13:47talking about health policy without
• 13:48defining it, so let's do
• 13:50that now.
• 13:51I really view health policy
• 13:53as being the laws, the
• 13:54regulatory decisions, the judicial outcomes,
• 13:57and the governmental practices that
• 13:58shape,
• 14:00sorry, people's access to well-being.
• 14:02I told you I was
• 14:03doing the Tech Tetris.
• 14:05In this sense,
• 14:06I view a judge's written
• 14:08opinion in a lawsuit challenging,
• 14:10say,
• 14:11a preventative care, no cost
• 14:13sharing mandate to be health
• 14:15policy because that opinion, especially
• 14:17if it sets the precedent
• 14:18for future laws or future
• 14:20interpretations of policy,
• 14:22to be really impactful in
• 14:23patient care.
• 14:25A governmental practice, for instance,
• 14:27of family separation,
• 14:29I would also view as
• 14:30health policy because it shapes
• 14:32the trajectory of children's lives
• 14:34and,
• 14:35does so by imposing an
• 14:36adverse childhood experience that impacts
• 14:38cognitive function.
• 14:40Lawsuits that
• 14:42challenge that practice and seek
• 14:43restitution
• 14:44for harms caused by that
• 14:46practice are also forms of
• 14:47health policy because then they
• 14:49change how that practice is
• 14:50viewed in the future and
• 14:51how it might unfold.
• 14:56Okay.
• 14:57So
• 14:59what is the social contract,
• 15:00and why do we care
• 15:01about it in this sense?
• 15:03Social contract was dealt developed
• 15:05by, Jean Jacques Rousseau during
• 15:07the enlightenment, and we thought
• 15:08we had crazy political times,
• 15:10but they had crazier political
• 15:12times. So I'd like to
• 15:13remind myself of that.
• 15:14In the latter half of
• 15:15the eighteenth century, Rousseau sought
• 15:16to describe the implicit agreement
• 15:18between a people and their
• 15:19governing power. Some freedoms have
• 15:22to be ceded
• 15:23in order to have exchange
• 15:26for protection of those remaining
• 15:27freedoms.
• 15:29We all want to live
• 15:30in a maintained social order.
• 15:32I'm I'm guessing.
• 15:33I I certainly feel that
• 15:35way.
• 15:36And I think it's an
• 15:37important fact that we have
• 15:38to
• 15:40really remember that we don't
• 15:41actually get to keep every
• 15:42single one of our freedoms.
• 15:44So which ones get seeded
• 15:45in health policy and medical
• 15:47spaces, and which ones can
• 15:48be retained and protected?
• 15:50I don't have an answer
• 15:52right off the
• 15:55cuff to that, and I
• 15:55don't really know who does,
• 15:57and or even if those
• 15:58questions have been asked in
• 15:59in policy spaces.
• 16:00But I think it's fun
• 16:02to think about it. And
• 16:03another thing I think is
• 16:04fun when I'm dealing with
• 16:05a heavy concept or one
• 16:06that feels quite complicated
• 16:08is to look at how
• 16:09kids think about it. Right?
• 16:11So as a pediatrician, I
• 16:13love trying to inhabit the
• 16:14same mental space as a
• 16:15child.
• 16:17I took this picture of
• 16:19a
• 16:20kind of like those large,
• 16:23pads of paper that everyone
• 16:24scrolls on in the classroom
• 16:25in a fifth grade classroom
• 16:26where all these kids talked
• 16:27about
• 16:28what they saw their social
• 16:30contract
• 16:31with their teacher, with their
• 16:32school, with their peers to
• 16:34be.
• 16:35And you see words like
• 16:37fair,
• 16:38honest,
• 16:40like family,
• 16:41nice,
• 16:42listen, overwhelmingly positive concepts. And
• 16:45that's what the social contract
• 16:46really should be about, a
• 16:47healthy and constructive framework
• 16:50that on the whole works
• 16:51for everybody.
• 16:53I think it's also important
• 16:54that all these kids sign
• 16:55their names to it. Right?
• 16:57Because a social contract should
• 16:59be transparent,
• 17:00should know who's participating in
• 17:01it, who's issuing it,
• 17:04who are the parties involved.
• 17:06So
• 17:07what does all of this
• 17:08have to do with health
• 17:09policy?
• 17:11Members of
• 17:12my professional community, who are
• 17:14you guys,
• 17:16my patients,
• 17:17our patients,
• 17:19have ceded some of their
• 17:20rights to the state in
• 17:21exchange for a sense of
• 17:22well-being and access to medical
• 17:23care.
• 17:24But I want us to
• 17:25begin to think about how
• 17:27we might dissect that question
• 17:28and what that really means.
• 17:32Okay. So
• 17:34let's just talk about how
• 17:36health care regulates itself, the
• 17:38policies that we operate by
• 17:41without any sort of external
• 17:42influence. Because I think it
• 17:43bears emphasis
• 17:45that to just say that
• 17:46we operate within a system
• 17:48that kind of does its
• 17:49own governmental work. We govern
• 17:51ourselves. How do we do
• 17:52that?
• 17:54Areas that do not have
• 17:57much or any external influence
• 17:59from governmental policy
• 18:01include the scientific process as
• 18:03it stands,
• 18:04guideline development.
• 18:07I would say the basic
• 18:08tenets of bioethics don't really
• 18:09exist written down in some
• 18:11law or in some court
• 18:12case. Right? These those areas
• 18:14absolutely intersect at times, but
• 18:16it's not as if one
• 18:17inherently supersedes the other.
• 18:21The very nature of participating
• 18:23in medical training requires a
• 18:24ton of internal self regulation,
• 18:27the way your medical school
• 18:28is is accredited. Right? The
• 18:30requirements that it has to
• 18:31meet in order to hand
• 18:32you a diploma,
• 18:33and then the requirements that
• 18:34you then have to meet
• 18:35in order to continue on
• 18:36to care for other people.
• 18:38All of those things are
• 18:39internally produced policies that we're
• 18:41all
• 18:42I would say, for the
• 18:42most part, pretty good at
• 18:43following.
• 18:44And we create
• 18:46and edit them. It goes
• 18:47through iterative processes. We have
• 18:49our own kind of, like,
• 18:50little
• 18:51democracy
• 18:52flourishing within
• 18:53the climate that we work
• 18:54in.
• 18:55However,
• 18:57I think it's important to
• 18:58note that it would feel
• 18:59odd
• 19:00if there was a law
• 19:02that says how you could
• 19:04publish a paper.
• 19:05Right?
• 19:06That doesn't exist
• 19:07to my knowledge.
• 19:10How guidelines are developed is
• 19:12a very iterative process kind
• 19:14of described by the National
• 19:15Academy of Medicine, which my
• 19:17picture didn't work on this
• 19:18computer. I'm sorry about that.
• 19:19It's just a screenshot of
• 19:20guidelines we can trust.
• 19:23The evidence pyramid is a
• 19:25mutually agreed upon concept and
• 19:27evidence based medicine that determines
• 19:29how we filter
• 19:30data signals from noise.
• 19:33It would be very weird
• 19:34if there was some sort
• 19:35of law
• 19:36saying how we should read
• 19:37those things and how we
• 19:38should operationalize them. Right? And
• 19:40I think it's also interesting
• 19:41to think about why.
• 19:43There seems to me, from
• 19:45my position, a tacit understanding
• 19:47from our policymakers that they
• 19:49probably don't wanna go there
• 19:50because they probably don't know
• 19:51exactly what it's about or
• 19:53even that these concepts exist.
• 19:55Right? So I'm just signposting
• 19:57that,
• 19:58but
• 19:59it is also important to
• 20:00recognize
• 20:01the policy and health care
• 20:02do intersect. We do collaborate
• 20:04via the sense of external
• 20:05regulation.
• 20:06When I say the state,
• 20:07I'm referring to government. I'm
• 20:09referring referring to kind of
• 20:10like a very general term.
• 20:12I'm not talking about the
• 20:12state of Connecticut or,
• 20:14anything along those lines. So
• 20:16just know that as I
• 20:17use that term.
• 20:19Traditionally,
• 20:20the power of the state
• 20:21is involved in health care
• 20:24in specific ways.
• 20:25So
• 20:26when I am practicing medicine,
• 20:28I am mindful of tort
• 20:29and liability laws. I am
• 20:31mindful of the fact that
• 20:32my institution has a malpractice
• 20:34insurance policy
• 20:38that has to do with
• 20:39how I practice. You know?
• 20:41It's not steering my hand.
• 20:42It's not telling me what
• 20:43to do, but it's it's
• 20:45there. You know? Kind of
• 20:46like bumpers on a bowling
• 20:48bowl
• 20:49bowling out. What do you
• 20:50call it? Bowling alley?
• 20:52Bowling alley lane.
• 20:54Sorry.
• 20:55Licensing requirements. Right? So if
• 20:56I wanna practice medicine in
• 20:57the state of Connecticut,
• 20:59I have to fulfill many
• 21:00different criteria
• 21:02continually, annually. Right? I just
• 21:04got this really large booklet
• 21:05from the state that says
• 21:06that I need to get
• 21:08more continuing medical continuing medical
• 21:10education and domestic violence and
• 21:12substance use prevention.
• 21:15That comes from the state.
• 21:18The Affordable Care Act,
• 21:20mandated that grade a recommendations
• 21:22from the United States preventative
• 21:24service task force be covered
• 21:26at no cost sharing.
• 21:28That is a law
• 21:30dictating medical care, so to
• 21:32speak. Right? Enhancing access to
• 21:33care.
• 21:36The American,
• 21:37Committee on Immunization
• 21:40and Prevention. Sorry. I just
• 21:41blanked on what ASIP stands
• 21:42for. I'm so sorry.
• 21:45Talks to public health entities
• 21:46and decides,
• 21:48you know, via shared communication
• 21:50what vaccines are gonna be
• 21:52mandated in school based settings.
• 21:54And then there's environmental and
• 21:55food regulation. So many different
• 21:57areas, and I would say
• 21:58that the most fruitful examples
• 21:59that benefit patients themselves are
• 22:01when there's actual collaboration, and
• 22:03it's not just kind of
• 22:04a dictatorial
• 22:05state says this, we do
• 22:06that.
• 22:08The key distinction between the
• 22:09self regulation that we do
• 22:10and the external regulation that
• 22:12the state brings to us
• 22:14is that there are consequences
• 22:15when we don't follow through
• 22:16with what the state wants.
• 22:18Right? We can be sued.
• 22:19We can lose our license.
• 22:20We can go to jail.
• 22:22We can pay heavy fines.
• 22:23So
• 22:25the stakes are a little
• 22:25bit higher.
• 22:27And I think that's also
• 22:29just good to keep in
• 22:29mind.
• 22:33So
• 22:34I have been
• 22:35dancing around this for a
• 22:36little while now, but what
• 22:38I want to
• 22:39start to zero in on
• 22:40is that to me, from
• 22:42the position that I occupy
• 22:44as somebody who provides health
• 22:45care for adolescents and young
• 22:46adults,
• 22:47health policy feels like it's
• 22:49changing. I am open to
• 22:50discussion on this. If somebody
• 22:52has more historical context and
• 22:54wants to take me back
• 22:55further in time, I would
• 22:56love to hear about that.
• 22:58I can only speak to
• 22:59what my experiences have been
• 23:01from my med school graduation
• 23:02date in twenty thirteen to
• 23:04today.
• 23:06By pervasive,
• 23:07meaning I feel that health
• 23:09policy is more pervasive, I
• 23:10mean that the volume of
• 23:11policies that impact health and
• 23:12well-being
• 23:13seem to be increasing,
• 23:15and the topics that these
• 23:16policies touch upon
• 23:18seem to encircle people more
• 23:20tightly,
• 23:21in their communities and in
• 23:22their personal lives,
• 23:23and have a more concentrated
• 23:26impact on vulnerable people or
• 23:28people who have less resources
• 23:29and have family and community
• 23:31level effects.
• 23:32So what do I mean
• 23:33by this?
• 23:34Policies that impact family structure
• 23:36and parenting, for instance. So
• 23:37I already mentioned family separation,
• 23:40or in interference
• 23:42in the family structure based
• 23:44on predisposed immigration status.
• 23:46I think we all know
• 23:48that that is
• 23:49a policy that's on the
• 23:50rise, and I view it
• 23:51as a health policy because
• 23:52I feel it in my
• 23:53exam room so when my
• 23:54patients talk to me about
• 23:55this, or when my patients
• 23:56tell me that they saw
• 23:57a classmate arrested on-site.
• 24:00Child endangerment terminology
• 24:03is,
• 24:04more present in various policies,
• 24:06especially those that,
• 24:09impact access to gender affirming
• 24:11medical care. Meaning, the rhetoric
• 24:12there is that
• 24:15the consent
• 24:17to gender affirming medical care
• 24:18can be classified as a
• 24:19form of abuse or child
• 24:20endangerment,
• 24:22positioning the state as the
• 24:24appropriate medical decision maker
• 24:26over a parent who would,
• 24:28in legal ways, endanger their
• 24:30child.
• 24:31Fetal personhood laws. Right? So
• 24:33laws that
• 24:34treat a fetus as a
• 24:35patient,
• 24:37as somebody who can experience
• 24:39medical harm,
• 24:40and then
• 24:42assign certain parental behaviors such
• 24:44as substance use as a
• 24:46form of child abuse.
• 24:48And then finally, I think
• 24:49the other one that feels
• 24:50much much more pervasive and
• 24:51is very relevant
• 24:53to some of my colleagues
• 24:54in other states is there
• 24:55there
• 24:56newer laws that permit the
• 24:58remanding
• 24:59of LGBTQ
• 25:00youth to not accepting foster
• 25:02homes, whereas this had previously
• 25:04been an illegalized practice.
• 25:06So the Tennessee Foster
• 25:08and Adoptive Parent Protection Act,
• 25:10is the one I'm specifically
• 25:11naming.
• 25:12And
• 25:13these policies
• 25:16meet people where they are,
• 25:18kind of in their lives
• 25:18and outside of our exam
• 25:20rooms, but we detect their
• 25:21impact
• 25:22in those settings.
• 25:24And by invasive, meaning that
• 25:26I feel as though health
• 25:26policy is more invasive,
• 25:28I mean policies that determine
• 25:30what care patients can and
• 25:32cannot have
• 25:33either via direct permission
• 25:35or by,
• 25:37determining financial feasibility.
• 25:40So these are policies
• 25:42that,
• 25:44you know, with some examples
• 25:46being
• 25:47work requirements
• 25:48and,
• 25:50stage provisions that,
• 25:53chip away at people's access
• 25:55to health care via the
• 25:56one big beautiful bill act.
• 25:58In the next six to
• 25:59twelve months, all states are
• 26:01gonna need to determine
• 26:02a really complex process by
• 26:04which people can certify that
• 26:06they meet
• 26:07certain criteria for work or
• 26:09disability or volunteer work or
• 26:11student status. And what that
• 26:13means is in the exam
• 26:14room, we are gonna be
• 26:15thinking about whether or not
• 26:16this person has
• 26:18continued access to their insurance
• 26:20and therefore can get the
• 26:21health of health care that
• 26:22we deem and they deem
• 26:23medically necessary
• 26:24or they cannot.
• 26:28Another kind of, like, lesser
• 26:29known example is the end
• 26:31of adolescent confidentiality
• 26:33via title ten funded services
• 26:35in the state of Texas.
• 26:36So in twenty twenty four,
• 26:37there was a court ruling
• 26:38in a case called Deanda
• 26:40versus Becerra where
• 26:42a father challenged,
• 26:44his,
• 26:47challenged the standard, which is
• 26:48that adolescents can seek reproductive
• 26:50health care without getting their
• 26:51parents
• 26:52permission,
• 26:54and he won that case.
• 26:55So that is something that
• 26:56also happens in the exam
• 26:57room. Because what it looks
• 26:59like is
• 27:01if you want this care
• 27:02confidentially,
• 27:04I can't give it to
• 27:05you.
• 27:07I think that
• 27:08there's so many more examples
• 27:10I could go over. I'm
• 27:11trying to pick big ones
• 27:12that you might know about
• 27:13and then smaller ones that
• 27:14you might not know about
• 27:15so we can kind of
• 27:16learn, but then connect to
• 27:17things that you're probably hearing
• 27:18about day in, day out.
• 27:21So
• 27:25what I would then contend
• 27:27is that
• 27:28pervasive and invasive health policy
• 27:31distorts normal
• 27:32relationships.
• 27:35And what I am used
• 27:36to
• 27:37in, you know, recent years
• 27:39and from the beginning of
• 27:40my career
• 27:41is kind of minimal presence
• 27:42of the state in clinical
• 27:43settings. You don't really feel
• 27:45it all that much.
• 27:46The patient, the provider,
• 27:48patients, and the health system
• 27:51have a relationship that's largely
• 27:53just between them.
• 27:55And the stuff that they
• 27:55discuss tends to stay in
• 27:57there, and there is this
• 27:58opportunity for highly individualized discussions
• 28:00about one single person's goals,
• 28:03identity,
• 28:03those types of
• 28:05things. But
• 28:07what we're starting to see
• 28:09is a different type of
• 28:10situation
• 28:11where
• 28:12when the state dictates or
• 28:15tells us what is and
• 28:16is not possible
• 28:17medically,
• 28:18we're not really practicing health
• 28:20care, but we're actually being
• 28:22the enforcers
• 28:23of what
• 28:24they have dictated.
• 28:26So
• 28:28what this looks like is
• 28:30I can't do that. Right?
• 28:33That really
• 28:35I mean, I'll just be
• 28:36it harms the patient provider
• 28:37relationship
• 28:38because it changes the way
• 28:40that they might share information
• 28:41with you. It changes the
• 28:42fact that they might even
• 28:43capitalize on the relationship, and
• 28:45it changes the fact that
• 28:46that relationship might even
• 28:51exist.
• 28:52What I think bears particular
• 28:55emphasis here
• 28:56is that
• 28:58it takes
• 28:59expertise
• 29:01and opportunity to sit with
• 29:02an individual
• 29:03and to help them decide
• 29:05what might be best for
• 29:06them and to practice ethically
• 29:08sound medicine.
• 29:11But the state doesn't have
• 29:12the opportunity
• 29:13to do that
• 29:14because they will never meet
• 29:15each individual
• 29:16who they're determining access to
• 29:18care for, and they're never
• 29:20going to meet or discern
• 29:21what their actual needs might
• 29:22be.
• 29:25So,
• 29:29oh, sorry.
• 29:33One of the harms that
• 29:34I wanna signpost about this
• 29:35type of arrangement
• 29:38is
• 29:39the introduction of medical uncertainty
• 29:42into practice.
• 29:48So
• 29:49sorry. Lost my
• 29:51tech problem. Okay. There are
• 29:53many examples of this in
• 29:54recent years, but the one
• 29:55that I wanna highlight is
• 29:56that of Andrew, Adrianna Smith,
• 29:58who, was a thirty year
• 30:00old nurse,
• 30:01and a woman living in
• 30:02Atlanta
• 30:03who sought emergency care in
• 30:05her ninth week of pregnancy
• 30:06for severe headaches.
• 30:07It was not recognized
• 30:09for various reasons rooted in
• 30:11medical error and systemic bias
• 30:13that she had a series
• 30:14of interest cerebral clots.
• 30:16She had likely several strokes
• 30:19at home.
• 30:20She was brought into Emory
• 30:22University Hospital, which is where
• 30:23I did a lot of
• 30:24my medical training,
• 30:26and was declared brain dead,
• 30:28about twelve hours after discharge
• 30:29from the emergency room.
• 30:31Despite her mother, her medical
• 30:33decision maker's wish that she
• 30:35be removed from life support,
• 30:36the hospital contended that
• 30:39they were required,
• 30:42to maintain life sustaining measures
• 30:44because she was pregnant
• 30:46and that Georgia's
• 30:47abortion
• 30:48law prevented,
• 30:51her medical decision maker's wishes
• 30:53from being followed.
• 30:54This was kind of interesting
• 30:55because nobody knew what to
• 30:56do in this situation.
• 30:58Everyone was kind of guessing.
• 31:00And
• 31:01the state attorney general and
• 31:02the governor had even issued
• 31:03statements saying that that's not
• 31:04the case, and our law
• 31:05does not apply here. But
• 31:06it still left a lot
• 31:08of fear and uncertainty.
• 31:12The medical uncertainty is this.
• 31:15So this woman was kept
• 31:17alive
• 31:18via parental nutrition,
• 31:20intubation,
• 31:22bedside nursing care, vital sign
• 31:24monitoring
• 31:25for
• 31:27a long time, until her
• 31:28sixth month of pregnancy. And
• 31:30that's not an area of
• 31:31critical care that we know
• 31:33how to practice within.
• 31:35Right? We we just don't
• 31:37know how to do that.
• 31:38And as a pediatrician and
• 31:39one who
• 31:40used to take care of
• 31:41babies in the NICU, I
• 31:42can say that we don't
• 31:43know how to take care
• 31:44of a baby that has
• 31:47lived in a uterine environment
• 31:48that is challenged by so
• 31:50many different things for so
• 31:51long. So what ensued was
• 31:53a great deal of medical
• 31:54uncertainty where absolutely no evidence
• 31:56existed.
• 31:57And I would say that
• 31:58with the absence of evidence
• 31:59in forced medical care comes
• 32:00the absence
• 32:02of bioethical practice as well.
• 32:07Now I am not saying
• 32:08that health policy
• 32:10needs no regulation. Or sorry.
• 32:11I'm not saying that we
• 32:12don't need regulation. Right? There
• 32:14are so many examples,
• 32:15historical and recent,
• 32:17where
• 32:18our lapse in short renewal
• 32:19regulation has led to real
• 32:21harm.
• 32:22We used to institutionalize people
• 32:23with intellectual or physical disabilities,
• 32:26hoarding them off from society,
• 32:27and pretend like they didn't
• 32:28exist.
• 32:30We used to sanction
• 32:32and,
• 32:33enthusiastically
• 32:34recommend the practice of lobotomy,
• 32:36right, which severed the prefrontal
• 32:37cortex from the rest of
• 32:38the brain, left people with
• 32:40intractable seizures,
• 32:42hemorrhage, brain abscesses,
• 32:44complete changes in their identity,
• 32:46absolutely terrible quality of life.
• 32:49Up until recently, opioids used
• 32:51to be enthusiastically
• 32:52overprescribed despite
• 32:54resounding evidence to their addictiveness.
• 32:56Right?
• 32:57Privacy violations
• 32:59necessitated
• 32:59a law called HIPAA.
• 33:04Regarding reproductive health care, I
• 33:05feel this stuff in my
• 33:06exam room all the time.
• 33:09We have a very large
• 33:10population
• 33:11of,
• 33:12people with Puerto Puerto Rican
• 33:14heritage,
• 33:15and I
• 33:17know pretty quickly when I'm
• 33:18talking to somebody who understands
• 33:20that the legacy of the
• 33:22Puerto Rico pill trials conducted
• 33:23without informed consent with high
• 33:25toxic levels of,
• 33:28of estrogen in them leading
• 33:29to brain clots that that
• 33:31these girls know about this.
• 33:32And they know whether or
• 33:33not their grandmother or their
• 33:34great aunt was subjected to
• 33:37forced sterilization without consent as
• 33:40a measure of population control.
• 33:43So
• 33:45the real question though is,
• 33:46do we look to the
• 33:47state
• 33:48when these situations arise,
• 33:50or can we look beyond?
• 33:52And that's really what doctor
• 33:53Bruce is gonna talk about,
• 33:54but I just wanna
• 33:57show you
• 33:58the simplest little schematic.
• 34:02Policy is this beige circle
• 34:05that needs to move up
• 34:07and overlap with evidence and
• 34:08ethics. We need to live
• 34:09in the space where they
• 34:10all
• 34:11coexist.
• 34:12We know that this stuff
• 34:13is gonna change over time.
• 34:15What that involves
• 34:16is a lot of conversation,
• 34:18a lot of partnership,
• 34:19and involves our transparency,
• 34:21our surrendering to what we
• 34:23don't know,
• 34:24being being okay with that,
• 34:26being able to talk about
• 34:27it.
• 34:29And
• 34:31I'm gonna leave it there
• 34:32because I've gone a little
• 34:33bit over, and doctor Bruce
• 34:34will pick it up
• 34:36and give us some real
• 34:37action items on what that
• 34:38means.
• 34:50Thank you, doctor McNamara.
• 34:51Alright. We're off and running.
• 34:53Doctor Laurie Bruce.
• 34:56We're up.
• 34:57Thanks. Lots to think about
• 34:58and talk about. Sure. What?
• 35:28Okay. Can you hear me
• 35:30all right?
• 35:31Okay. Great.
• 35:34Thank you, Meredith,
• 35:35for your reflections on these,
• 35:38pressing and complicated challenges.
• 35:40And,
• 35:41thank you, Mark, for inviting
• 35:42me to be here today.
• 35:45Mark, you were one of
• 35:46the first people I met
• 35:47here at Yale.
• 35:48And,
• 35:49I simply can't imagine Yale
• 35:51bioethics without Mark Mercurio.
• 35:55Your insights and support over
• 35:56the years have been everything
• 35:58to me and to this
• 36:00broader, wonderful
• 36:01institution.
• 36:04Today I'll be discussing
• 36:06this idea of ethics and
• 36:08policymaking.
• 36:11Many of you may be
• 36:12aware that there was a
• 36:13time when research
• 36:14and ethics were two distinct
• 36:17paths,
• 36:18two distinct fields, and
• 36:20rather recently, they've merged into
• 36:22this idea of research ethics.
• 36:24We're still not there yet
• 36:26with respect
• 36:28to ethics and policy making
• 36:30outside of the courses I
• 36:31teach and the the work
• 36:33that I've been writing over
• 36:34the last several years. So
• 36:36I'm seeking to pull these
• 36:38worlds closer together.
• 36:42So I am a bioethicist
• 36:43and I'm one of the
• 36:44few bioethicist
• 36:45actually trained in policy
• 36:47analysis methods, which makes me
• 36:49a little bit quirky in
• 36:50this world of bioethics. But,
• 36:53many of the topics that
• 36:56I study from
• 36:57psychedelics
• 36:58to informed
• 37:00consent to
• 37:01laws
• 37:02impacting women in crisis,
• 37:05have become hot legislative issues.
• 37:09And,
• 37:10so I've applied my methods
• 37:12based work
• 37:13in ethical policy making to
• 37:16those topics to,
• 37:20and and so I've instigated
• 37:21changes to laws and regulations
• 37:24associated with
• 37:26my academic
• 37:27work.
• 37:29I spend a lot of
• 37:30time thinking through
• 37:32what might it mean to
• 37:34promote this idea of ethical
• 37:36policymaking,
• 37:38whose voices matter
• 37:40within health policy,
• 37:42whose voices ought to matter,
• 37:45and,
• 37:47whose voices have power, and
• 37:48how can I navigate
• 37:50and channel
• 37:51that influence to increase goodness
• 37:53within health policy? Right? Because
• 37:55that's what we as bioethicists
• 37:57like to do. We like
• 37:58to increase goodness and reduce
• 37:59harms.
• 38:00And how can I help
• 38:01to lift up the voices
• 38:02of those who aren't currently
• 38:04being heard
• 38:05within health policy?
• 38:07So in our short time
• 38:08together, I won't have time
• 38:10to outline many of the
• 38:11policy analysis methods that I
• 38:13often employ, but I'll touch
• 38:15upon some of the ways
• 38:16that,
• 38:17I find to be achievable
• 38:19for scholars and clinicians
• 38:21who are seeking to extend
• 38:23their work
• 38:24outside of our academic bubble.
• 38:27And so I'll talk a
• 38:28bit about some policy theories
• 38:30as well that can help
• 38:31give us a bit of
• 38:32a framework
• 38:33to understand just the nature
• 38:35of
• 38:36policy making here in the
• 38:37United States.
• 38:39And so as we've been
• 38:41discussing, policy seeks to influence
• 38:43behavior.
• 38:45Some health policies influence decision
• 38:47making, like laws
• 38:49around end of life.
• 38:51Other health policies place restrictions
• 38:54on products that may be
• 38:55harmful
• 38:56to certain
• 38:57populations,
• 38:58like, you know, vaping for
• 39:00children. Right?
• 39:01Other health policies may
• 39:04open windows of opportunity
• 39:05to create more options
• 39:07in various aspects of healthcare.
• 39:12So there's always been,
• 39:14a bit of an ebb
• 39:15and flow in terms of
• 39:17who
• 39:18has influence within policy making.
• 39:21For many laws and policies
• 39:23within health care,
• 39:25members of the medical community
• 39:27are central and influential stakeholders.
• 39:31In other,
• 39:32instances,
• 39:33we know that legislators,
• 39:35scholars,
• 39:35sometimes even community members,
• 39:38have a more prominent role.
• 39:40And we know, I'm sure,
• 39:42that policies tend to reflect
• 39:45the interests and values of
• 39:46those who write them.
• 39:49So policymaking is well described
• 39:52through a model,
• 39:53referred to as the Kingdon
• 39:55model.
• 39:56And,
• 39:57let's see here.
• 39:59Okay.
• 40:01At its core,
• 40:03Kingdon
• 40:04describes the three main components,
• 40:06which he calls streams,
• 40:09that are required to create
• 40:10favorable conditions to permit policymaking
• 40:14to actually happen.
• 40:16First, you need a problem.
• 40:18Problems are defined by the
• 40:20broader community.
• 40:22A problem could be, for
• 40:23instance, climate change.
• 40:26Kingdon's model also requires a
• 40:29solution.
• 40:30The solution is defined by
• 40:32the policy stakeholders, which can
• 40:34be indeed people like you
• 40:35and me. So a solution
• 40:37could be, for instance, public
• 40:39transportation.
• 40:41Public transportation
• 40:42could be a solution to
• 40:43the problem of climate change.
• 40:46And the third criterion
• 40:48is political will or momentum.
• 40:52Policy influencers
• 40:54wait for a problem to
• 40:56be defined
• 40:57or identified,
• 40:58and then they attempt to
• 40:59hook their solution
• 41:01onto that
• 41:03problem
• 41:03to successfully
• 41:05instigate a policy change.
• 41:07However, without a defined problem
• 41:09or without momentum,
• 41:11change is unlikely.
• 41:14So even for our friends
• 41:16advocating for public transportation,
• 41:18even if they have the
• 41:19best solution that meets the
• 41:21problem,
• 41:22that solves the problem,
• 41:23if without momentum, you have
• 41:25really no hope. Right?
• 41:27So no matter how hard
• 41:28they work, there are these
• 41:30external factors outside of their
• 41:31control
• 41:32that influence their ability to
• 41:34succeed.
• 41:35And so Kingdon loves to
• 41:37talk about that. And note
• 41:38that momentum,
• 41:40is a bit of a
• 41:40wild card. Right? We're seeing
• 41:42that we can't always predict
• 41:44when it will arise.
• 41:51Kingdon says that we should
• 41:53think of momentum like a
• 41:54wave in the ocean. He
• 41:56has lots of lots of
• 41:57water metaphors throughout his work,
• 41:59and policymakers should be like
• 42:01the surfers, he says. He
• 42:03says we should be ready
• 42:04for the wave to appear,
• 42:06and we should also understand
• 42:07that we can't really predict,
• 42:08right, when the wave happens.
• 42:09Like, are you in any
• 42:10of you surfers?
• 42:12Oh, yeah. Okay. Got a
• 42:14couple. Alright? So you guys
• 42:15know, like, you can be
• 42:16ready to surf, but if
• 42:18you don't have a wave,
• 42:19right, you're not gonna go
• 42:20anywhere.
• 42:21And so Kingdon says,
• 42:23and so this is something
• 42:24that, you know, I've talked
• 42:25about in a couple different
• 42:26places, including,
• 42:27this short essay
• 42:29in Hastings Center. And it's
• 42:30important to know
• 42:32about momentum because it helps
• 42:34us to acknowledge that we
• 42:36can work really hard,
• 42:38and we can even have
• 42:39the right
• 42:40answer to something, an incredibly
• 42:42robust plan,
• 42:43but
• 42:45a host of issues can
• 42:46thwart your efforts for change.
• 42:48So understanding
• 42:50how policy works can help
• 42:52us to learn to navigate
• 42:53it, right?
• 42:54So some of those include
• 42:56interest groups and political will
• 42:58and the views and values
• 42:59and beliefs of legislators,
• 43:02and misperceptions
• 43:03or perceptions by the public.
• 43:06And sometimes,
• 43:08everyone agrees with you
• 43:10that your policy solution is
• 43:12the right course of action,
• 43:14but other topics may be
• 43:15deemed more important
• 43:17within that legislative season. And
• 43:19so even though everyone says,
• 43:20yep, I agree with you,
• 43:21Lori, we're gonna have to
• 43:23table that for next year,
• 43:24the year after.
• 43:26And so,
• 43:28time can also thwart your
• 43:30attempts at change.
• 43:34So thinking through what is
• 43:36valued,
• 43:38while momentum is indeed unpredictable,
• 43:42there are ways that we
• 43:44as policy influencers
• 43:46can indeed manifest momentum.
• 43:49It's not easy to do,
• 43:51but it is possible.
• 43:52Part of manifesting
• 43:54momentum is understanding
• 43:56what's valued,
• 43:58what's valued within the policy
• 43:59making conversation,
• 44:01and it's different for every
• 44:02policy.
• 44:04For example, I had been
• 44:05working to instigate an expansion
• 44:08of informed consent practices,
• 44:11and I saw that the
• 44:12voices
• 44:13with evidence,
• 44:15with great evidence
• 44:17weren't gaining enough traction.
• 44:19And this was despite decades
• 44:21of their advocacy, and those
• 44:22voices include many physicians,
• 44:25legislators,
• 44:26ethicists, scholars,
• 44:28med students, lots of stakeholders.
• 44:30And so
• 44:31and yet nothing change wasn't
• 44:33happening. And so I brought
• 44:34in new voices
• 44:35by conducting a national survey
• 44:37of community members.
• 44:39My survey design was influenced
• 44:41by Cornelius and Harrington for
• 44:43those of you designing,
• 44:44surveys. I I love their
• 44:46model.
• 44:47And so they have this
• 44:48social justice approach to survey
• 44:50design,
• 44:52and I tied it to
• 44:53the insights that my community
• 44:55bioethics forum members experienced nationally
• 44:58across
• 44:59their,
• 45:00their experiences
• 45:02with their families and friends
• 45:03too.
• 45:05The CBF is this policy
• 45:07advisory
• 45:08group that seeks to more
• 45:09fully include the voices and
• 45:10values of community members within
• 45:12health policy.
• 45:13And that's a model that
• 45:14was created by Carol Powers
• 45:16at Harvard,
• 45:18which I have adapted here.
• 45:20And so in my survey
• 45:22results, I found there was
• 45:23evidence that was actually considered
• 45:25valuable to the discussion.
• 45:27Not considered you know, I
• 45:28thought it was valuable, but
• 45:29it was considered valuable by
• 45:31others.
• 45:34And so
• 45:38and so I found that
• 45:40that survey data actually tipped
• 45:42the scales. My paper on
• 45:44the national survey was covered
• 45:46by national news, by this
• 45:47guy here, and so our
• 45:49cause finally had momentum.
• 45:52And so within about six
• 45:53weeks of this story breaking,
• 45:57we had an expansion of
• 45:58federal informed consent regulations
• 46:01issued by the US Department
• 46:02of Health and Human Services.
• 46:05And so I would say
• 46:06that the point of this
• 46:07example
• 46:09is to elucidate
• 46:11Kingdon,
• 46:12to demonstrate that
• 46:14policy change requires momentum,
• 46:19that the path to momentum
• 46:21is not always known. And
• 46:23indeed, if I I had
• 46:24no idea whether my survey
• 46:25results would be influential or
• 46:27not. I just kind of
• 46:28threw it out there. And
• 46:29so much of policymaking is
• 46:31really like throwing something up
• 46:32against the wall and seeing
• 46:34what works. And sometimes you
• 46:36think you have your formula
• 46:37down, but it was only
• 46:38for that one issue
• 46:40because there are so many
• 46:41factors at play that you
• 46:42can't control, that are different
• 46:44every single time.
• 46:46And so for another policy
• 46:47that I'm working on, I
• 46:49don't know if a national
• 46:50survey is going to have
• 46:51any impact whatsoever. So you
• 46:53really just have to try
• 46:54a bunch of
• 46:58your the policy community and,
• 47:01try different
• 47:02approaches. But also the importance
• 47:05here is that we need
• 47:06to be prepared
• 47:07for the wave to occur,
• 47:09for momentum to manifest,
• 47:11even though we don't know
• 47:12when it's going to come
• 47:13along.
• 47:16So this means that we
• 47:18need to work to understand
• 47:22whose voices
• 47:23will sway public opinion
• 47:26of those in power.
• 47:28Right? It's not just me.
• 47:29Right? No one you know,
• 47:30people might listen to me,
• 47:33but not all the time.
• 47:34Right? So you have to
• 47:35figure out whose voices are
• 47:36important,
• 47:37whose voices are valued. Right?
• 47:39And build coalitions with multiple
• 47:42stakeholders.
• 47:43Be known by
• 47:45the legislators
• 47:46who matter
• 47:47and get your research out
• 47:49into
• 47:50the world. Right? Don't
• 47:52just keep it in an
• 47:53academic journal.
• 47:57Taking
• 47:58another
• 47:59example, I've also had a
• 48:01number of successes at the
• 48:02state level, such as my
• 48:03work influencing infant abandonment laws.
• 48:07When I publish academic articles
• 48:10on a subject, I
• 48:12almost always look for journals
• 48:14that are also interested in
• 48:15publish publishing an accessible
• 48:18and publicly available article
• 48:20about my manuscript.
• 48:23And so Mark and Clara
• 48:25Lewis and I worked on
• 48:26a paper on infant abandonment,
• 48:28and,
• 48:29we decided, you know, to,
• 48:32have it, published in pediatrics.
• 48:35And in addition to the
• 48:36article itself, the editors
• 48:39wrote up
• 48:40another story. They wrote up
• 48:42an article in plain language
• 48:44that was helpful for reporters,
• 48:46for journalists,
• 48:48right, for
• 48:49legislators,
• 48:50and for other folks who,
• 48:54don't have access to our
• 48:56papers when we may not
• 48:57have the funding to make
• 48:58them open access. Right?
• 49:01And so this resulted in
• 49:02media coverage and increased public
• 49:04awareness.
• 49:05And I saw that many
• 49:07of the ideas that we
• 49:09had advocated for
• 49:11had then didn't indeed
• 49:13trickle into the bills and
• 49:15the laws
• 49:16of the following legislative
• 49:18season. Those were things that
• 49:19we had uniquely advocated for.
• 49:22So change is possible.
• 49:26And these aren't the only
• 49:27methods that I use to
• 49:29bring my academic work into
• 49:31the public sphere.
• 49:35I write a lot of
• 49:36op eds.
• 49:37I write academic
• 49:39blogs that are accessible,
• 49:41meaning anyone can click on
• 49:42the link and read it,
• 49:43but also accessible in the
• 49:45kinds of language that I
• 49:46use.
• 49:48I've also issued open letters
• 49:50to federal departments. And I
• 49:51see many of my cosigners
• 49:53here in the audience for
• 49:55a couple of those. And
• 49:56I've given written and oral
• 49:58testimony
• 49:59when many bills are proposed
• 50:01about topics
• 50:02that I've,
• 50:03studied extensively over many, many
• 50:06years.
• 50:07I've also advised legislators
• 50:09through lectures and small group
• 50:11sessions.
• 50:13Sometimes they invite me to
• 50:14debate, and so I'll I'll
• 50:16debate,
• 50:17others, you know? And and
• 50:19so there are all different
• 50:20ways that,
• 50:21you can engage with legislators
• 50:23to help them learn a
• 50:25little bit more
• 50:26about your own unique perspectives
• 50:29and ideas.
• 50:32So this kind of approach
• 50:34helps to disseminate
• 50:35knowledge
• 50:36across wider audiences.
• 50:39And in turn, I've seen
• 50:41these recommendations
• 50:42be
• 50:43integrated
• 50:44into bills and law.
• 50:47Today's legal and regulatory
• 50:49landscape is shifting in ways
• 50:51that we may not have
• 50:52imagined.
• 50:54Future changes may indeed be
• 50:56hard to predict right now.
• 50:58We see these changes potentially
• 51:00impacting many aspects of health
• 51:02care, including weather and how
• 51:04psychedelics are used to treat
• 51:06trauma,
• 51:07depression, and anxiety, and a
• 51:09whole host of other kinds
• 51:11of medical problems.
• 51:13And so the,
• 51:15current landscape
• 51:17calls for increased
• 51:19cross sector collaboration,
• 51:21including increased partnership between academics
• 51:24and policymakers
• 51:26so that we can think
• 51:27more creatively
• 51:28about,
• 51:29or just in ways that
• 51:30we've never perhaps thought of
• 51:32before.
• 51:34For instance, in light of
• 51:35shifting federal oversight, especially within
• 51:37psychedelics, we can look for
• 51:39ways to be creative
• 51:40with state or local law
• 51:43or institutional
• 51:44guidelines or
• 51:46association
• 51:47guidelines
• 51:48to empower our clinicians and
• 51:50to empower our patient population.
• 51:53And as mentioned in our
• 51:55short time together, we can't
• 51:56cover some of the more
• 51:58time intensive
• 51:59means of influencing policy that
• 52:01I often use in my
• 52:02work, but I will share
• 52:04some low hanging fruit,
• 52:06methods to extend your academic
• 52:08work to influence policy
• 52:10in ways that are not
• 52:11only achievable,
• 52:13but potentially
• 52:14really powerful and impactful.
• 52:21So when we are seeking
• 52:23to
• 52:25extend our expertise
• 52:26to policy,
• 52:28we need to keep our
• 52:29audience in mind.
• 52:30Many health laws are at
• 52:32the state level,
• 52:34and many state legislators
• 52:36lack formal training within policy
• 52:39analysis methods
• 52:41within bioethics.
• 52:43Although quite a few of
• 52:43them that have been working
• 52:44with me over the years,
• 52:46are actually very impressive and
• 52:48they come to me with
• 52:49incredibly
• 52:51nuanced ethical questions and they
• 52:52say, Hey, Laurie, is this
• 52:53ethical? And then we get
• 52:54into this really awesome discussion.
• 52:56So it's been,
• 52:58a great learning opportunity for,
• 52:59for me as well.
• 53:02Many state legislators are disproportionately
• 53:04responsive to a handful of
• 53:06interest groups and that's not
• 53:08their fault. They don't have
• 53:09much time.
• 53:10And many of them only
• 53:12work for the government for
• 53:13a portion of the year.
• 53:15Here in Connecticut I don't
• 53:16know if you know this,
• 53:17but it is
• 53:19a part time legislative cycle.
• 53:21And so they're off doing
• 53:23other things, running their family
• 53:25businesses
• 53:26or or taking on other
• 53:27kinds of roles to earn
• 53:28an income when the session
• 53:30is not active.
• 53:33And many, of course, aren't
• 53:34reading the academic literature, right,
• 53:36that are relating to their
• 53:37policy work. They're going to
• 53:39access
• 53:40sources that are different from
• 53:42the ones that we directly
• 53:44produce.
• 53:45And so,
• 53:47what can we do? Right?
• 53:49There are a number of
• 53:50viable steps that we can
• 53:52take to influence policy.
• 53:55Recognize
• 53:56that the kind of information,
• 53:57as I mentioned, that's sought
• 53:59by legislators
• 54:00is not at all the
• 54:02kind,
• 54:03of information we usually produce
• 54:04as academics.
• 54:06Learning what they need is
• 54:08truly critical to your knowledge
• 54:10of, to your knowledge being
• 54:12successfully
• 54:13interpreted and translated into policy.
• 54:16Legislators
• 54:17also need documents that they
• 54:19and their staff can read
• 54:20quickly and get to without
• 54:23firewalls.
• 54:30So I would encourage you
• 54:32not only to write your
• 54:33academic papers,
• 54:35but to also think through
• 54:36ways that you can extend
• 54:38your knowledge and other forums.
• 54:41I encourage you to learn
• 54:42how to write blogs,
• 54:44write op eds,
• 54:46write short reports that are
• 54:48available
• 54:48without a firewall,
• 54:51learn how to write legislative
• 54:53briefs.
• 54:54Op eds plant seeds in
• 54:56the minds of the public
• 54:57and in your legislator's
• 54:59minds as well. They're not
• 55:01always instantly successful. Right? You're
• 55:03not gonna write one op
• 55:04ed and change the world,
• 55:05but you will help to
• 55:07contribute to
• 55:08the the growing more nuanced,
• 55:11kind of information that's out
• 55:13there in the world, and
• 55:14they can certainly be effective
• 55:16over time.
• 55:18I have seen it personally.
• 55:20And so sometimes I write
• 55:21in top newspapers. Right? Like,
• 55:22sometimes I'll be writing in
• 55:24the big papers.
• 55:25But often, I deliberately
• 55:27write in the small and
• 55:28more local papers,
• 55:30the ones that are still
• 55:31getting printed out and being
• 55:32thrown in the morning,
• 55:34where your grandpa reads them.
• 55:36Right? You know? Because you
• 55:37want to read your meet
• 55:39your audiences
• 55:40where they're at.
• 55:42And
• 55:42I love working at the
• 55:44local level. I love finding
• 55:45certain outlets that will publish
• 55:48my work in lots of
• 55:49small newspapers
• 55:50all across the US because
• 55:52those are the kinds of
• 55:53nuanced conversations where we're really
• 55:55working bottom up.
• 55:58You also wanna find out
• 56:00where your legislators what what
• 56:03your legislators are reading. Right?
• 56:05You know, it's it's great
• 56:06to have, something published in
• 56:08a top top paper. But
• 56:10if your legislator is not
• 56:11reading it, you know, you're
• 56:12not gonna influence them. So
• 56:14find out what are they
• 56:15reading,
• 56:16especially during legislative season and
• 56:18especially before legislative season.
• 56:20And then you want to
• 56:21get your op eds in
• 56:23those places.
• 56:24And while single author pieces
• 56:26are often desired in our
• 56:28world, co authoring can help
• 56:29to open new doors to
• 56:31new audiences
• 56:32and can help to uncover
• 56:34new angles on issues. And
• 56:36I love,
• 56:37working on coauthored op eds
• 56:39because it brings such a
• 56:41richness and a local flavor
• 56:43to a lot of the
• 56:44issues that I work on
• 56:45nationally.
• 56:46But when I, for instance,
• 56:47wanted to reach out to
• 56:48Texas legislators, of course,
• 56:51I reached out and I
• 56:52found a wonderful coauthor who's
• 56:54from Texas, who's in medical
• 56:56school in Texas
• 56:57and was able to, offer
• 56:59some incredible insights that I
• 57:01didn't know about that made
• 57:02it contextually
• 57:03important within
• 57:05the the Texan mindset.
• 57:08So don't just write an
• 57:10op ed. Learn how to
• 57:11write one,
• 57:12because there is a a
• 57:13unique style to them. Don't
• 57:15just assume that because you
• 57:16can write a compelling academic
• 57:17paper that's you're just gonna,
• 57:19like, shorten it down, and
• 57:20it'll be, like, your abstract
• 57:21or something.
• 57:22You really need to learn
• 57:23how to write the public
• 57:25facing version.
• 57:27And there are many guides
• 57:28on how to write op
• 57:29eds and how to write
• 57:30academic blogs, and I've included
• 57:32some links for you here.
• 57:35Another tool is to write
• 57:38open letters that I've mentioned.
• 57:40You write those to policy
• 57:42makers.
• 57:43You can write them to
• 57:45department of HHS or other
• 57:46places and encourage your colleagues
• 57:48to sign them.
• 57:50When I create open letters,
• 57:52I sometimes cite them within
• 57:54my academic papers because that
• 57:56demonstrates how the issue is
• 57:57salient and time sensitive and
• 58:00on the minds of many
• 58:01key stakeholders.
• 58:03Sometimes when you're publishing an
• 58:04article, you kind of have
• 58:06to create your own evidence
• 58:07because
• 58:08sometimes you're working on a
• 58:10hot issue that may not
• 58:11even be published about much.
• 58:13And so this is one
• 58:15way of really demonstrating
• 58:17to,
• 58:17your readers that this is
• 58:19something
• 58:20that people,
• 58:22are currently really valuing
• 58:24and and care about.
• 58:26You can also just use
• 58:27it in your letter to
• 58:28the editor. Right? If there's
• 58:29not a perfect place to
• 58:30put it in your article,
• 58:31that will help demonstrate that
• 58:33many people care about a
• 58:34particular topic and encourage them
• 58:37to see, you know, this
• 58:38is something that that matters.
• 58:44The SSN, the Scholars Strategy
• 58:46Network is a wonderful resource
• 58:48for you to know about
• 58:49if you are
• 58:51interested
• 58:52in impacting policy.
• 58:55I I rely on them
• 58:57quite a bit.
• 58:59You eventually, you know, throughout
• 59:01your career, you'll develop relationships
• 59:03with journalists. Right? That you'll
• 59:04be able to email or
• 59:05call, and you'll be able
• 59:06to say, hey. You know,
• 59:07I have a hot story.
• 59:09But when you're still not
• 59:10there yet or if there
• 59:11are places that you want
• 59:12to,
• 59:13reach where you don't yet
• 59:15have contacts,
• 59:16SSN
• 59:17knows all of the journal
• 59:19editors and all of the
• 59:20papers everywhere, and they also
• 59:22know legislators. And their whole
• 59:24reason for existing
• 59:26is to help connect scholars
• 59:29with,
• 59:30the media
• 59:31and with legislators
• 59:33and other prominent policymakers.
• 59:36And so instead of having
• 59:37to go to the Boston
• 59:38Globe and click submit,
• 59:41an editorial,
• 59:42you can reach out to
• 59:43SSN. You can say, hey.
• 59:45You know, I'd really love
• 59:46if you could pitch me
• 59:47to the Boston Globe or
• 59:49to another paper. And they
• 59:50might say, you know, you're
• 59:51not gonna have a shot
• 59:52at that based on what
• 59:53you sent me, and you
• 59:54can say why. Right? And
• 59:55and then you can say,
• 59:56well, let me tell you
• 59:57how to pitch it to
• 59:57the editor. And so I've
• 59:59often worked with them, and
• 01:00:00then the process of getting
• 01:00:02my op eds out there
• 01:00:02is often a lot faster
• 01:00:04because,
• 01:00:05I'm working with them, and
• 01:00:06I've gotten to know many
• 01:00:08of them really well.
• 01:00:10So that's something to think
• 01:00:11about, and SSN does more
• 01:00:13than that. They have,
• 01:00:15scholar profiles that you can
• 01:00:17set up so that the
• 01:00:18media, when they're looking for
• 01:00:19an
• 01:00:20expert, can go and and
• 01:00:21find you.
• 01:00:23And they even have an
• 01:00:24op ed writing workshop coming
• 01:00:25up on September twenty fifth.
• 01:00:26So reach out to Mandana
• 01:00:28if you want to be
• 01:00:29a part of it. There's
• 01:00:30a Connecticut chapter of SSN
• 01:00:32that's very active and very
• 01:00:33supportive.
• 01:00:34And sometimes the Connecticut chapter
• 01:00:36plans
• 01:00:37these sessions where you can
• 01:00:39submit an abstract and say
• 01:00:40I'd like to talk
• 01:00:42to Connecticut legislators
• 01:00:43before the legislative season starts
• 01:00:46about
• 01:00:46my work.
• 01:00:48And then you can go
• 01:00:49and you can, another it's
• 01:00:50another way of you being
• 01:00:51able to make connections and
• 01:00:54just get to know your
• 01:00:55legislators.
• 01:00:57Many other ways you can
• 01:00:59influence policy. You can, of
• 01:01:00course, give testimony.
• 01:01:02You can give written testimony
• 01:01:04or oral and in person
• 01:01:05testimony, but, again, learn how
• 01:01:08to do this
• 01:01:09before just doing it.
• 01:01:12There is, for example, a
• 01:01:13format that legislators
• 01:01:15like and appreciate,
• 01:01:17and there's also a formality
• 01:01:18to it that might surprise
• 01:01:20you. And so when you
• 01:01:21take the time to learn
• 01:01:23how to do that properly,
• 01:01:25it signals that you care
• 01:01:27and respect for those individuals
• 01:01:29and that you are willing
• 01:01:31to
• 01:01:32to figure out
• 01:01:33what kind of information they
• 01:01:35needed and in what format.
• 01:01:38So you want to learn
• 01:01:39what it means to present
• 01:01:40respectfully, how to organize your
• 01:01:42thoughts within their structure and
• 01:01:44their expectations.
• 01:01:46Hearing testimony is quite frankly
• 01:01:48exhausting for legislators,
• 01:01:50so learn their world and
• 01:01:52how you can fit into
• 01:01:53it.
• 01:01:54SSN, I think, sometimes also
• 01:01:56has sessions on how to
• 01:01:58give testimony,
• 01:02:00but, you know, there are
• 01:02:01lots of guides to those
• 01:02:02that you can find out
• 01:02:03as well.
• 01:02:05And I do recommend that
• 01:02:06you build relationships with your
• 01:02:09legislators and policymakers
• 01:02:11before you actually need them.
• 01:02:12Right? You don't want to
• 01:02:14cold call your legislators and
• 01:02:16say, I want you to
• 01:02:18push my bill through your
• 01:02:19committee
• 01:02:20this year. And they'll be
• 01:02:21like, who are you? You
• 01:02:22know? Like, I I don't
• 01:02:23know you. You know? I
• 01:02:24I'd love to have some
• 01:02:25time, but I already have
• 01:02:27thirty bills on my desk.
• 01:02:29You know, so especially if
• 01:02:30you can meet with them
• 01:02:32in the off season and,
• 01:02:33you know, get to know
• 01:02:34them, get to know what
• 01:02:35they care about, find the
• 01:02:37right legislator that cares about
• 01:02:39the issues that you care
• 01:02:40about.
• 01:02:43And over time, I think
• 01:02:44you'll be surprised at the
• 01:02:45level of trust that you
• 01:02:46can build and the kinds
• 01:02:47of relationships you can build
• 01:02:49and get to know their
• 01:02:50world more and how insanely
• 01:02:51difficult it is and how
• 01:02:53incredible they are at navigating
• 01:02:55it.
• 01:02:57And finally, you might have
• 01:02:59the most perfect dataset or
• 01:03:01evidence
• 01:03:03that you may have carefully
• 01:03:04created, and
• 01:03:06everyone would even agree that
• 01:03:08you already have the solution
• 01:03:10to a policy problem.
• 01:03:12But if it's not a
• 01:03:14source that's trusted by those
• 01:03:16who are holding power,
• 01:03:19it doesn't really matter.
• 01:03:22Right?
• 01:03:23So we need to
• 01:03:25not only understand whose voices
• 01:03:27ought to matter,
• 01:03:29whose voices
• 01:03:30do matter within
• 01:03:32policy making, whose voices have
• 01:03:34the power?
• 01:03:35So think through who might
• 01:03:37be more trusted
• 01:03:39and how you can navigate
• 01:03:41that and get to know
• 01:03:43how to,
• 01:03:45get that to work for
• 01:03:47you and for your cause.
• 01:03:50So when momentum finally comes
• 01:03:52along
• 01:03:53and indeed it may and
• 01:03:55I've seen it happen,
• 01:03:56you'll have all the pieces
• 01:03:58in place to actualize policy
• 01:04:00change.
• 01:04:03So I want to thank
• 01:04:04you all for being here
• 01:04:05and especially for my students
• 01:04:08in the audience. I would
• 01:04:10love to talk to you
• 01:04:11at some point about my
• 01:04:13summer institute in bioethics.
• 01:04:15We have a lot of
• 01:04:16fun. It's very global, it's
• 01:04:17very multidisciplinary
• 01:04:19and many of the fine
• 01:04:21faculty you see here,
• 01:04:23are, are what really make
• 01:04:24it the incredible program that
• 01:04:26it is. And so I'm
• 01:04:28grateful to
• 01:04:29Jen and to Steve and
• 01:04:31to Jack and to Mark
• 01:04:33and to Ben.
• 01:04:35So many of you have
• 01:04:36made it happen. And, Howard,
• 01:04:37we're gonna pull you in
• 01:04:38next year.
• 01:04:39So so with that, I'll
• 01:04:40turn things back over to
• 01:04:42Mark. Thank you all for
• 01:04:43your time and attention.
• 01:04:50It's terrific. This is really
• 01:04:52a master class, and and,
• 01:04:53you know, I'm so pleased
• 01:04:55that that we did this.
• 01:04:56So we're gonna set these,
• 01:04:58how should we do this?
• 01:04:59We shall we're gonna we're
• 01:05:00gonna go around and ask
• 01:05:02questions. I don't know. Laurie
• 01:05:03and,
• 01:05:04Meredith, if you guys wanna
• 01:05:05just,
• 01:05:06come up here.
• 01:05:08So this would turn out
• 01:05:09to be good. I was
• 01:05:09you know, we almost booked
• 01:05:11Nate Bargaske for tonight,
• 01:05:13but I'm glad that it
• 01:05:13didn't work out. So we
• 01:05:14got these two, and this
• 01:05:16is really an interesting mix.
• 01:05:18And and just in case
• 01:05:19you didn't get it, particularly
• 01:05:20for the students,
• 01:05:21it's
• 01:05:22what you have here is
• 01:05:23not just a theoretical
• 01:05:25conversation.
• 01:05:26Okay?
• 01:05:27Meredith
• 01:05:28has been working in various
• 01:05:30spheres and in but ultimately
• 01:05:32also at the bedside. Right?
• 01:05:33I mean, with the patients,
• 01:05:35directly the patients. Lori is
• 01:05:36not just talking about affecting
• 01:05:37policies. Lori has has has
• 01:05:39done work that has led
• 01:05:40to changes in the law,
• 01:05:44national level. So this is
• 01:05:46this is very real,
• 01:05:48but it's not,
• 01:05:49it's not simple or easy.
• 01:05:51I I really like the
• 01:05:52analogy of surfing, and I
• 01:05:53heard that I didn't see
• 01:05:54it from up there, but
• 01:05:55apparently two people lied and
• 01:05:56said there was, come on,
• 01:05:57you guys aren't surfers. But
• 01:05:58and it's it's great. It's
• 01:05:59it's a really very interesting
• 01:06:00in terms of waiting for
• 01:06:01your moment.
• 01:06:03I like that very much.
• 01:06:04But do you do you
• 01:06:05guys wanna come up here
• 01:06:05so you know Ami, is
• 01:06:07that alright? Yeah.
• 01:06:09And,
• 01:06:10and then,
• 01:06:11if you,
• 01:06:12as you come up with
• 01:06:13this, Tina.
• 01:06:15And so let's let's kinda
• 01:06:16we've got we've got,
• 01:06:18about seventeen minutes for questions,
• 01:06:21comments.
• 01:06:22There was a lot of
• 01:06:23stuff going over. I thought
• 01:06:24that case,
• 01:06:25that Adrianna Smith case was
• 01:06:26really very interesting.
• 01:06:28And I, you know, I
• 01:06:29I think that most of
• 01:06:30you probably follow that. The
• 01:06:32one thing that the bioethicist
• 01:06:33and the audience were thinking,
• 01:06:34I mean, it says she
• 01:06:34was kept alive, and the
• 01:06:36the the bioethicist and the
• 01:06:37audience was saying, well, she
• 01:06:37wasn't really kept alive. Her
• 01:06:39heart was kept beating.
• 01:06:40But but but I think
• 01:06:42that many bioweb systems are
• 01:06:43out of you. She, in
• 01:06:43fact, wasn't alive. But her
• 01:06:44heart was kept beating, and
• 01:06:45she was, exchanging gas and
• 01:06:48providing,
• 01:06:49and providing,
• 01:06:51nutrition
• 01:06:52to the fetus. And that
• 01:06:53was a that was a
• 01:06:54terribly complicated case, especially when
• 01:06:55the attorney general said, no.
• 01:06:56We don't have a problem.
• 01:06:57You know, you can do
• 01:06:58and then it it really
• 01:07:00was very hard to see
• 01:07:01from where we were exactly
• 01:07:02what was going on.
• 01:07:04But it raised fascinating questions
• 01:07:05that we still grapple with.
• 01:07:06Things like fetal personhood and
• 01:07:07whatnot that we've been grappling
• 01:07:09with for a very long
• 01:07:10time. But you see, these
• 01:07:12aren't just theoretical problems. This
• 01:07:14stuff happens.
• 01:07:15And when it happens,
• 01:07:17I mean, having had these
• 01:07:19conversation in advance and this
• 01:07:20kind of preparation is hugely
• 01:07:21helpful. So the the concrete
• 01:07:23examples as well as the
• 01:07:24abstract conversation of how these
• 01:07:26things come together was really
• 01:07:27very nice, but I've talked
• 01:07:28enough. I wanna hear from
• 01:07:30someone who has questions for
• 01:07:31one of our two speakers
• 01:07:32tonight.
• 01:07:36Steve.
• 01:07:37Now wait one second because,
• 01:07:39it's right up in front.
• 01:07:39Thank you, Karen.
• 01:07:43I have a question that
• 01:07:44I hope is a crossover
• 01:07:45for both of you because,
• 01:07:47Meredith,
• 01:07:48you were talking about how
• 01:07:49in the current environment in
• 01:07:51particular, the last few years
• 01:07:52in particular,
• 01:07:53there has been more invasion
• 01:07:54by regulation
• 01:07:55of what used to be
• 01:07:57the physician's self regulate
• 01:07:59self regulated space.
• 01:08:00And, Laurie, I think
• 01:08:03both in
• 01:08:04consent for intimate exams and
• 01:08:07maybe here I'm a little
• 01:08:08bit more ignorant, but maybe
• 01:08:09also in psychedelics,
• 01:08:12you argue for policy when
• 01:08:14professional self regulation is failing.
• 01:08:18So I I wonder if
• 01:08:19you have in common the
• 01:08:20idea
• 01:08:21that the time when policy
• 01:08:23should invade medicine
• 01:08:25is when self regulatory mechanisms
• 01:08:28are failing, and it should
• 01:08:29not
• 01:08:30invade
• 01:08:31otherwise. I think your complaint
• 01:08:33is that it's invading even
• 01:08:34in places where professional self
• 01:08:36regulation has been doing fine.
• 01:08:38But you did point out
• 01:08:39things like sterilization and and
• 01:08:41lobotomies and so on, and
• 01:08:42I think Lori's work points
• 01:08:44to the same kind of
• 01:08:44thing. There are areas where
• 01:08:45professional medical self regulation and
• 01:08:48the self regulation of medical
• 01:08:49edge educational institutions and things
• 01:08:52aren't working,
• 01:08:53and that's when you need
• 01:08:54to rush off to your
• 01:08:55legislator and say, make them
• 01:08:56do make them make the
• 01:08:57doctors do it right.
• 01:08:59But short of that kind
• 01:09:01of failure,
• 01:09:02they should keep hands off.
• 01:09:04Is that a fair
• 01:09:06do you agree with that?
• 01:09:07Or if not, why?
• 01:09:12Okay. Can you hear me?
• 01:09:13Yep. We've got a hold
• 01:09:14of it up close. So
• 01:09:15Alright. So thanks, Steve. That's
• 01:09:17a great question.
• 01:09:20I I'd like to say
• 01:09:21that I always try for
• 01:09:23institutional
• 01:09:24policy or practice change first.
• 01:09:27I'm
• 01:09:28often very hesitant
• 01:09:30to create law.
• 01:09:32Law doesn't always do what
• 01:09:34you expect it to do.
• 01:09:36There can be all kinds
• 01:09:37of unintended
• 01:09:38consequences,
• 01:09:39and I'm not here to,
• 01:09:41you know, police anyone. You
• 01:09:42know? I'm not here to
• 01:09:42just inflict law on others.
• 01:09:42I I think the the
• 01:09:42best solutions
• 01:09:57challenges within a policy,
• 01:09:59whose voices and values ought
• 01:10:01to be reflected
• 01:10:02within those policies, and try
• 01:10:04to do it at the
• 01:10:05institutional level, at the association
• 01:10:08level.
• 01:10:10Sometimes,
• 01:10:12that doesn't work for a
• 01:10:13variety of reasons, and sometimes
• 01:10:15it just makes sense to
• 01:10:16have a law because then
• 01:10:18it can help,
• 01:10:19you know, physicians,
• 01:10:21be guided in terms of,
• 01:10:22you know, the the order
• 01:10:24of decision making at end
• 01:10:25of life for a patient.
• 01:10:26Right? Those laws make a
• 01:10:27lot of sense.
• 01:10:29But I remember when, you
• 01:10:30know, sometimes when legislators come
• 01:10:32to me and they say,
• 01:10:33hey, Laurie. You know, this
• 01:10:35other state has this law.
• 01:10:37Should we do that? Is
• 01:10:38that ethical? You know? And
• 01:10:40they'll they'll just, like, text
• 01:10:41me. Me. They'll be like,
• 01:10:41hey. Should we do that?
• 01:10:43And I'll be like,
• 01:10:44you know, and if it's
• 01:10:45not an issue, I know
• 01:10:46they they laugh because I
• 01:10:47always say give me six
• 01:10:48months. They're like, oh god,
• 01:10:49Laurie. You know? But, like,
• 01:10:51I I you know, to
• 01:10:52me, ethics is so much
• 01:10:53of of appealing of an
• 01:10:54onion. And if you have
• 01:10:56a knee jerk response to
• 01:10:57something
• 01:10:58that may, you know sometimes
• 01:11:00your gut's right, but sometimes
• 01:11:02there are so many factors
• 01:11:04that influence,
• 01:11:06what's right and what
• 01:11:08ought to be manifested in
• 01:11:10a policy over time.
• 01:11:12So, indeed, when self regulation
• 01:11:15fails, I think,
• 01:11:16the law is often the
• 01:11:18way to go to be
• 01:11:19able to reduce harms and
• 01:11:20to increase that goodness within
• 01:11:22health policy, but to always,
• 01:11:24always
• 01:11:25include
• 01:11:27those who are impacted by
• 01:11:28the policy. You know, talk
• 01:11:30to them whether it's through
• 01:11:31national surveys or focus groups
• 01:11:33or community bioethics forums or
• 01:11:36different ways because we think
• 01:11:37we may have the answer,
• 01:11:39but there have been so
• 01:11:40many times where I've seen
• 01:11:42well intended policies
• 01:11:44really be very hurtful,
• 01:11:46public policies, especially.
• 01:11:49And so,
• 01:11:50taking that time to do
• 01:11:52some due diligence and work
• 01:11:54with those who are impacted
• 01:11:55can can have a very
• 01:11:57positive effect.
• 01:11:59Maryse?
• 01:12:00I'll I'll just say very
• 01:12:01quickly that
• 01:12:04the duality of our of
• 01:12:05our kind of perspectives actually
• 01:12:06does really meet in the
• 01:12:07middle, and and we do
• 01:12:09kind of want the same
• 01:12:10things. But the the problem
• 01:12:11with with a law is
• 01:12:13laws are not made to
• 01:12:15be repealed when we learn
• 01:12:16new things. Right? Like like,
• 01:12:18this contention, for instance, in
• 01:12:20youth gender care that, you
• 01:12:21know, there isn't enough evidence
• 01:12:23to support x y z.
• 01:12:24I mean, we could have
• 01:12:25an argument about the evidence,
• 01:12:27but
• 01:12:29a law that employs evidence
• 01:12:31or a dearth of evidence
• 01:12:32as a reason to interfere
• 01:12:34seems really flawed.
• 01:12:36So the mechanism of how
• 01:12:38regulation happens
• 01:12:40needs to be really flexible.
• 01:12:41And I'm not really
• 01:12:43seeing legislation as being that.
• 01:12:44I think, you know,
• 01:12:47litigation
• 01:12:47is interesting because it's how
• 01:12:49laws are interpreted and and
• 01:12:51and how future laws are
• 01:12:52made. And and participation in
• 01:12:54those processes is what I
• 01:12:55have found to be so
• 01:12:56much fun and so interesting
• 01:12:57and gratifying and also something
• 01:12:59that
• 01:13:01I, you know, am am
• 01:13:02just learning about more every
• 01:13:03day.
• 01:13:06I
• 01:13:07I think, you know,
• 01:13:08what we're all really talking
• 01:13:10about is the need for
• 01:13:11crosstalk and a shared language.
• 01:13:14If if our policymakers,
• 01:13:15if our governments do not
• 01:13:17understand
• 01:13:18what what people need to
• 01:13:20thrive, then,
• 01:13:23they're unlikely to hit that
• 01:13:24mark.
• 01:13:26And and that's the you
• 01:13:27know, it's the consequences of
• 01:13:28that that I that I
• 01:13:29see again and again.
• 01:13:32Thank you both, and thanks,
• 01:13:33Steve, for the insightful question.
• 01:13:35But but there's I'd see
• 01:13:36a it's it kind of
• 01:13:38begs the question a little
• 01:13:39bit. So to back it
• 01:13:40up a little bit. So
• 01:13:41when
• 01:13:41when
• 01:13:43we fail
• 01:13:45as clinicians
• 01:13:46or as clinicians and as
• 01:13:47patients, when we're not getting
• 01:13:49it right,
• 01:13:50at that point,
• 01:13:51that may be necessary for
• 01:13:52the law to step in.
• 01:13:54Right? The problem is that
• 01:13:55that's a very subjective assessment,
• 01:13:57isn't it? That the assumption
• 01:13:58that, well, now this is
• 01:13:59and we look back at
• 01:14:00the the historical exam. So
• 01:14:02that was you know, you
• 01:14:03did a lovely job in
• 01:14:04the end of that particular
• 01:14:05meeting. So by the way,
• 01:14:05here's some examples where the
• 01:14:07law actually came in because
• 01:14:08we were screwing up. But
• 01:14:09I don't think lobotomies were
• 01:14:10ever banned. I think the
• 01:14:12the profession regulated itself on
• 01:14:13that. Right? But but but
• 01:14:15well, sometimes the profession regulated
• 01:14:17itself. Sometimes I'm not sure
• 01:14:18which.
• 01:14:19But but my point being
• 01:14:20that
• 01:14:22when
• 01:14:23when we as a profession
• 01:14:26are getting it wrong I
• 01:14:27mean, so I on a
• 01:14:28simple point, I would say,
• 01:14:29well, if the patient and
• 01:14:30the doctor agree on what
• 01:14:32should happen or if the
• 01:14:33parent and the doctor agree
• 01:14:34on what should happen, that
• 01:14:35the law should stay out
• 01:14:36of it. And the answer
• 01:14:37to that might be, usually,
• 01:14:39the law should stay out
• 01:14:39of it, but there may
• 01:14:40be exceptional times where, in
• 01:14:41fact, we're doing stuff that's
• 01:14:43wrong, and we might need
• 01:14:44the law. But Research on
• 01:14:45human subjects. Research on human
• 01:14:47subjects is an excellent example.
• 01:14:48And my point is that
• 01:14:49it's very it is very
• 01:14:52subjective as to when we're
• 01:14:54getting it wrong. That and
• 01:14:56therein lies the problem. And
• 01:14:57this isn't so when it's
• 01:14:58speaking one of my more
• 01:14:59insightful medical students so long
• 01:15:00ago, the law is kind
• 01:15:01of can be the last
• 01:15:03stop if we're all getting
• 01:15:04it wrong. But but the
• 01:15:05the the determination that we're
• 01:15:06getting it wrong is a
• 01:15:07very subjective one. Even if
• 01:15:09in retrospect, some of these
• 01:15:10things seem pretty clear. They
• 01:15:11don't all seem clear. Certainly,
• 01:15:13the stuff that people are
• 01:15:13arguing about now isn't there's
• 01:15:15not obviously consensus on many
• 01:15:17of these things.
• 01:15:19So who do we have?
• 01:15:23Please. Thank you for both
• 01:15:25of you and your time
• 01:15:26for this.
• 01:15:27I'm sort of curious as
• 01:15:28someone that's starting my training,
• 01:15:30and maybe I speak for
• 01:15:31some of the rest of
• 01:15:32us that it's a little
• 01:15:33unclear
• 01:15:34how seriously
• 01:15:36the policy makers, stakeholders take
• 01:15:38people are are still in
• 01:15:40that training process.
• 01:15:41How do you suggest that
• 01:15:42people in the training process
• 01:15:44can begin policy advocacy
• 01:15:46before they're necessarily, like, a
• 01:15:47fully flourished
• 01:15:49physician, nurse, person that's practicing?
• 01:15:51The first thing I wanna
• 01:15:52tell you is that you
• 01:15:53actually have way more clout
• 01:15:55than
• 01:15:56people who are further along
• 01:15:57in the process if you
• 01:15:58buy into it,
• 01:16:00because
• 01:16:01you have kind of like
• 01:16:03the credibility of
• 01:16:05being the future.
• 01:16:06Right? And also,
• 01:16:08I mean, I'm just gonna
• 01:16:09say it,
• 01:16:11you don't
• 01:16:12have as many allegiances
• 01:16:14to institutions
• 01:16:16or licensing boards or whatever
• 01:16:18it is. And that allows
• 01:16:20you to really speak your
• 01:16:22truest heart,
• 01:16:25in
• 01:16:25whatever setting you think is
• 01:16:27appropriate. So I think the
• 01:16:28first thing I would say
• 01:16:28is just have a lot
• 01:16:29of conviction
• 01:16:31in
• 01:16:31where you're coming from and
• 01:16:33this this stage of where
• 01:16:34you're at. If I could
• 01:16:35go back in time, I
• 01:16:36I might express myself more,
• 01:16:39when I was exactly in
• 01:16:40your shoes.
• 01:16:42And you guys also haven't
• 01:16:43necessarily drank the Kool Aid
• 01:16:44yet, you know, which, which
• 01:16:46many of us in the
• 01:16:47in the profession have. So
• 01:16:48yeah. So I I think
• 01:16:49that's a and, Laurie, didn't
• 01:16:50you mention that, actually, one
• 01:16:51of your collaborators on something
• 01:16:52recently is a medical student
• 01:16:54in Texas. Yes?
• 01:16:55Absolutely.
• 01:16:57And, you know, the the
• 01:16:58wonderful
• 01:17:00aspect of medical students is
• 01:17:01that you're still sort of
• 01:17:03outsiders. Right? You're you're entrenched
• 01:17:06in one world, and you're
• 01:17:09entering another world. And and
• 01:17:10so you're straddling this this,
• 01:17:13am I in medicine? Am
• 01:17:14I of medicine? Am I,
• 01:17:16you know, I I want
• 01:17:17to be in medicine, but
• 01:17:18some of this stuff doesn't
• 01:17:20feel right. And I don't
• 01:17:21know what to do, and
• 01:17:22I don't wanna risk everything.
• 01:17:24And, you know, there's there's
• 01:17:25complexity there. And,
• 01:17:28and, my heart goes out
• 01:17:29to you because there are
• 01:17:31challenges that, you you so
• 01:17:33bravely face.
• 01:17:35But I would say,
• 01:17:36I have seen medical students
• 01:17:39be the singular
• 01:17:41drivers
• 01:17:42of really important state laws,
• 01:17:46including some consent laws in
• 01:17:48Hawaii that,
• 01:17:50that were drawn out of
• 01:17:52one student who felt really
• 01:17:54uncomfortable
• 01:17:55with certain practices he was
• 01:17:57being asked to participate in.
• 01:17:59And so,
• 01:18:01there's a whole range of
• 01:18:04experiences and responses and ways
• 01:18:06to navigate,
• 01:18:08being in the world in
• 01:18:09which you occupy.
• 01:18:12And that's why the the
• 01:18:14course here on professionalism
• 01:18:16and ethics, I think, is
• 01:18:17so,
• 01:18:18impactful for you to help
• 01:18:20you, you know, ask those
• 01:18:22hard questions. You know, we
• 01:18:23have Karen. We have,
• 01:18:25Jack. We have I don't
• 01:18:26know if
• 01:18:27who else is a part
• 01:18:28of that, but it's it's,
• 01:18:30it's a wonderful course to
• 01:18:31help with that navigating process.
• 01:18:33But I've seen,
• 01:18:35many instances, and I'm happy
• 01:18:36to share with you, where
• 01:18:37med students have indeed had
• 01:18:40a very powerful voice. I've
• 01:18:41also seen times when they've
• 01:18:43been shot down. Right?
• 01:18:45And in those cases,
• 01:18:47that may be
• 01:18:48because of,
• 01:18:50you know, that broader world
• 01:18:52that I'm talking about, that
• 01:18:53broader,
• 01:18:55environment that isn't that that
• 01:18:57is saying, well, you know,
• 01:18:58these guys seem smart. You
• 01:19:00know? They're about to become
• 01:19:01doctors. But do they really
• 01:19:02know what's going on? You
• 01:19:04know? Are they really the
• 01:19:05people that we can go
• 01:19:06to? Or, you know, when
• 01:19:07we're hearing a different version
• 01:19:08from someone else who's much
• 01:19:10older and more distinguished, you
• 01:19:12know, maybe those people are
• 01:19:13right. Right? And so I
• 01:19:15would say that's where we
• 01:19:16get into the power of
• 01:19:18coalitions and the power of
• 01:19:20collaborative work so that you
• 01:19:22can share those findings
• 01:19:24with trusted physicians,
• 01:19:26with the ethicists teaching your
• 01:19:28courses,
• 01:19:29and with medical associations sometimes.
• 01:19:31And and really, you know,
• 01:19:33don't give up.
• 01:19:35But some and sometimes it
• 01:19:36really is like throwing something
• 01:19:37against the wall and seeing,
• 01:19:39is this going to work
• 01:19:40for me in the state
• 01:19:41where I am, in the,
• 01:19:43you know, little microcosm where
• 01:19:45I live?
• 01:19:46What's going to to
• 01:19:48impact change? And we often
• 01:19:50don't know. You know? I
• 01:19:51I do things all the
• 01:19:52time, and I think,
• 01:19:53hell if I know. Is
• 01:19:54this gonna work? And and
• 01:19:55sometimes it does work in
• 01:19:57in incredible ways, and then
• 01:19:59I'm really shocked by that.
• 01:20:00But, but I would say
• 01:20:02keep persevering and look for
• 01:20:04people
• 01:20:05in power and in, different
• 01:20:08positions here that you trust,
• 01:20:10who you feel has, the
• 01:20:12kind of moral compass that
• 01:20:14really resonates with you. We
• 01:20:15have heaps of them in
• 01:20:17the room here,
• 01:20:18and and
• 01:20:19build relationships with those people
• 01:20:21so that when you are
• 01:20:22in a position of feeling
• 01:20:24uncertain, you know who to
• 01:20:26go to to help guide
• 01:20:27you.
• 01:20:30Thank you very much. We
• 01:20:31have time for we'll take
• 01:20:32one more, short question, and
• 01:20:34then I got just a
• 01:20:35couple of quick announcements, and
• 01:20:36then I'll spring you. Go
• 01:20:38ahead, please.
• 01:20:39This this this lady right
• 01:20:39here.
• 01:20:47Thank you for your wonderful
• 01:20:48talk. I think many of
• 01:20:49us, especially
• 01:20:51people in the field for
• 01:20:52clinicians and public health workers,
• 01:20:54I feel like right now
• 01:20:55is a very unnatural time
• 01:20:56where there's, you know, everything
• 01:20:58happened with CDC,
• 01:20:59rolling back vaccine mandates in
• 01:21:01Florida. So in terms of,
• 01:21:03I guess, building momentum, but
• 01:21:05also reaching out to the
• 01:21:06people who are the most
• 01:21:07vulnerable, who are kind of
• 01:21:08the ones who are kind
• 01:21:09of pushing back against what
• 01:21:11we think is not, like,
• 01:21:12good science and evidence based
• 01:21:13medicine.
• 01:21:14I guess, what are some
• 01:21:15recommendations for reaching out to
• 01:21:17those groups, but also to
• 01:21:18the policy makers who are
• 01:21:20giving, you know, scientists such
• 01:21:22a large pushback in in
• 01:21:23this time?
• 01:21:32Those are great questions.
• 01:21:34I would say,
• 01:21:39there may be times in
• 01:21:40life where
• 01:21:41when you're surfing, you don't
• 01:21:43see any waves and you're
• 01:21:44thinking maybe I'll just, I
• 01:21:46don't know, become a kayaker.
• 01:21:49Right? And and maybe, like,
• 01:21:50this isn't, you know, maybe
• 01:21:52I'll never be successful. Right?
• 01:21:53But just keep in mind
• 01:21:55that,
• 01:21:56you know, what Kingdon tells
• 01:21:58us is
• 01:21:59to be prepared because the
• 01:22:01wave will come.
• 01:22:03And so in the interim,
• 01:22:05build your coalition,
• 01:22:07write all the op eds.
• 01:22:09I know lots of people
• 01:22:10who write their op eds,
• 01:22:12like, you know, way before
• 01:22:14legislative season so that if
• 01:22:16a bill is proposed
• 01:22:18that hits home for them,
• 01:22:20that is the the solution
• 01:22:22to a problem that's been
• 01:22:23proposed. They're ready to click
• 01:22:25send and to say to
• 01:22:26SSN, to say that to
• 01:22:27the Boston Globe, and to
• 01:22:28say New York Times, publish
• 01:22:30this now. Right? So you
• 01:22:31don't wanna be fumbling such
• 01:22:33that when the wave comes,
• 01:22:34you're gonna be hit by
• 01:22:35it and blown off your
• 01:22:36surfboard.
• 01:22:37Right? So use this time
• 01:22:39to
• 01:22:40become prepared. Build your coalition.
• 01:22:43Get to know people. And,
• 01:22:45also,
• 01:22:45I think we all
• 01:22:47should have humility and
• 01:22:49recognize that, you know, sometimes
• 01:22:51medicine is wrong. You know?
• 01:22:53Like, sometimes studies are published
• 01:22:55that are like, oh, actually,
• 01:22:56you know,
• 01:22:57wine isn't good for us
• 01:22:58or, you know, actually, cigarettes
• 01:23:00aren't good for us or,
• 01:23:01you know, all sorts of
• 01:23:02things change over time as
• 01:23:03we
• 01:23:04learn more about what makes
• 01:23:07us healthy given the conditions
• 01:23:08in which we live and
• 01:23:10the the abilities that we
• 01:23:11have,
• 01:23:12to perform different kinds of
• 01:23:14research. And so,
• 01:23:16you know, there have been
• 01:23:17times where
• 01:23:19that happens. And so for
• 01:23:20us all to have that
• 01:23:21humility to say, yeah. You
• 01:23:23know, sometimes we don't get
• 01:23:24it right. And I wanna
• 01:23:25listen to you, and I
• 01:23:26wanna hear, you know, why
• 01:23:28are why are you feeling
• 01:23:29uncomfortable? Like, why are you
• 01:23:31averse to something that I
• 01:23:33think is so very clearly
• 01:23:35right? Because when we can
• 01:23:37stop and slow down
• 01:23:39and and just have those
• 01:23:40conversations and do a lot
• 01:23:41more listening,
• 01:23:42I I think that,
• 01:23:44that wave will come,
• 01:23:46and then we'll just join
• 01:23:47hands and all serve together
• 01:23:48and sing Kumbaya. Right?
• 01:23:50Okay. Sounds so nice.
• 01:23:52I'll be there. So, just
• 01:23:55a little tip of this,
• 01:23:56maybe a little bit more
• 01:23:57specific. It feels a little
• 01:23:58bit weird to kind of
• 01:23:59like be waiting for harm
• 01:24:01to happen that will then
• 01:24:02document and then amplify in
• 01:24:04the hopes that we can
• 01:24:06share this message that look
• 01:24:07at all these bad things
• 01:24:08that happened because
• 01:24:10let's do something different. And
• 01:24:12I think there's a real
• 01:24:13role, especially for for, you
• 01:24:14know, kind of like our
• 01:24:15research minded people for modeling
• 01:24:16research, like modeling harm.
• 01:24:18So there was a case
• 01:24:20called Braidwood versus Becerra where,
• 01:24:22Braidwood, a,
• 01:24:24self identified Christian business determined
• 01:24:26that the coverage
• 01:24:29of PrEP,
• 01:24:30which is a grade a
• 01:24:31USPSDF
• 01:24:32mandate that everyone has to
• 01:24:34has to just pay for
• 01:24:35completely,
• 01:24:37that that violated their the
• 01:24:38business owner's religious beliefs,
• 01:24:40because it it to them
• 01:24:42facilitated,
• 01:24:43sex outside marriage,
• 01:24:45sex between people of the
• 01:24:46same sex, and IV drug
• 01:24:48use. Now there is no
• 01:24:49evidence that supports that the
• 01:24:51use of preexposure prophylaxis for
• 01:24:53HIV incentivizes
• 01:24:55more acts of sex, particular
• 01:24:57types of sexual behaviors or
• 01:24:59the contour of people's relationships.
• 01:25:00Right. It's just false.
• 01:25:03But saying this is false
• 01:25:07wasn't really
• 01:25:09an interesting message
• 01:25:10that landed,
• 01:25:11but it was the one
• 01:25:12that grabbed me.
• 01:25:14But then I worked with
• 01:25:15a really wonderful collaborative,
• 01:25:18group. I you know, here
• 01:25:19and at Harvard on a
• 01:25:20paper to model the impact
• 01:25:22of of reduction in cost
• 01:25:24sharing of PrEP. So we
• 01:25:26were able to show just
• 01:25:27using a back of the
• 01:25:28envelope calculation
• 01:25:29that,
• 01:25:31reduction of cost sharing by
• 01:25:32ten percent, you know, just
• 01:25:34ten percent of people lose,
• 01:25:35you know,
• 01:25:37free access to PrEP would
• 01:25:39lead to two thousand new
• 01:25:40cases of HIV
• 01:25:41in the following year.
• 01:25:43Now we have been able
• 01:25:45to prevent
• 01:25:46about that number of cases
• 01:25:48in the past five years.
• 01:25:50So
• 01:25:51that was picked up in
• 01:25:53the media, that statistic. And
• 01:25:55I I was, like, shocked
• 01:25:56to see it in four
• 01:25:58different,
• 01:25:59you know, mainstream media sources.
• 01:26:01And
• 01:26:02it didn't end up in
• 01:26:04the Supreme Court decision when
• 01:26:06they decided to kind of
• 01:26:07opine on it, and it
• 01:26:08didn't really
• 01:26:10like, the harm of of
• 01:26:11the actual,
• 01:26:12policy didn't really factor into
• 01:26:15whether or not it lived.
• 01:26:16There were legal reasons why
• 01:26:18the decision came down the
• 01:26:19way that it did, but
• 01:26:20it generated
• 01:26:24a renewed devotion to those
• 01:26:26preventative care mandates in our
• 01:26:27community because we're able to
• 01:26:28look at what the potential
• 01:26:29harms might be. So that's
• 01:26:31just a plug for modeling
• 01:26:33research,
• 01:26:34when you're waiting for you
• 01:26:35feel like you're waiting for
• 01:26:36bad things to happen.
• 01:26:37Okay. We're gonna have to,
• 01:26:39end it there. Thank you
• 01:26:40both very much.
• 01:26:45Thank you. Now a couple
• 01:26:46of quick announcements here. Karen
• 01:26:48wants me to remind you
• 01:26:49that in two weeks, we're
• 01:26:51meeting not Wednesday, but Tuesday.
• 01:26:52And you all I think
• 01:26:53you gotta you all should
• 01:26:54have gotten an email about
• 01:26:55that today. The second thing
• 01:26:57is the continuing education
• 01:26:59number for those of you
• 01:27:00who are getting your CE
• 01:27:01numbers is number five one
• 01:27:03six three six. Whoever has
• 01:27:05that number wins the, the
• 01:27:06free sandwich or something. Five
• 01:27:08one six three six. And
• 01:27:09then this is the phone
• 01:27:10number where you texted to.
• 01:27:11Is that right? Two zero
• 01:27:12three four four two nine
• 01:27:14four three five.
• 01:27:16Two zero three four four
• 01:27:18two
• 01:27:19nine four three five. Don't
• 01:27:21forget that for that students
• 01:27:22doing the concentration or who
• 01:27:24are ambitious to the concentration,
• 01:27:26make sure you sign in.
• 01:27:27We'll see you in thirteen
• 01:27:29days. Thanks for coming.