"Advancing Transgender and Gender Diverse Visibility and inclusion and Data Accuracy in Oncology"

March 23, 2022

Yale Cancer Center Grand Rounds | March 22, 2022

Presentations by: Drs. Juno Obedin-Maliver (she/her/hers) and Ash Alpert (they/them/theirs)

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00:00Take To introduce away our speakers
00:03for today's Smilow Cancer Hospital
00:05and Yale Cancer Center grand Rounds.
00:09Hosted by the Office of Diversity,
00:11Equity and Inclusion at Yale Cancer Center.
00:15And I'd like to start by introducing Dr.
00:17Obannon Malaver,
00:19who uses the pronouns she, her, hers.
00:22She is an assistant professor in the
00:24Department of Obstetrics and Gynecology
00:26at Stanford University School of Medicine.
00:29She specializes in gynecology and
00:31reproductive health care of needs of
00:34sexual and gender minority people,
00:36which include, but are not limited to,
00:38lesbian, gay, bisexual, transgender,
00:41queer and questioning people.
00:44This interesting experience.
00:45Grabs her research interests towards
00:47promoting the health and well
00:50being and equity of LGBTQI people.
00:52She is the director or Co director of
00:54the PRIDE study, a multi site online,
00:57prospective longitudinal cohort
00:58of sexual and gender minority
01:00individuals based at Stanford.
01:02She is also an incredible advocate
01:05in this space and has been
01:07very active in health policy.
01:09Doctor Ash Alpert,
01:10who uses the pronouns they them,
01:13is a current T 32 fellow in HealthEquity
01:15at the Center for Gerontology and
01:18Healthcare Research at Brown University
01:21at the School of Public Health.
01:24Doctor Albert's research investigates
01:26community solutions to improving
01:28the experiences and outcomes of
01:30transgender people with cancer.
01:32They work with an Advisory Board
01:34of transgender people who've been
01:35diagnosed with cancer and whom
01:37have they have conducted research.
01:39Published manuscripts and applied for
01:41grant funding over the last two years.
01:43This includes a young investigator
01:45award from conquered cancer to ask
01:48a foundation to develop patient
01:50centered and non stigmatising gender
01:52identity data collection methods.
01:54Doctor Alpert is also very involved
01:57with advocacy efforts.
01:58That includes the ASCO sexual and
02:00gender Minority Task Force and the NCCN.
02:03So it is our great pleasure to
02:04hear from both of them.
02:05Today I will pass the baton they will
02:08be presenting on advancing transgender
02:10and gender diverse visibility and
02:12inclusion and data accuracy and oncology.
02:15Thank you.
02:19And thank you so much for this
02:22kind welcome and introduction.
02:24We're both very honored to be here.
02:27Thank you. Doctor Collins as
02:28well as all of the attendees.
02:30Also to Renee and other folks who
02:33have helped with the logistics.
02:35It often takes an army to to
02:38make these things happen.
02:39So thank you so much. And.
02:44Overall, we'll be focusing today on
02:47specific mechanisms for improving
02:49visibility and inclusion of
02:51transgender people in oncology,
02:52and thereby ensuring that our
02:55data in clinical decision making
02:57are accurate and efficacious.
02:59You should say, I'm Juno,
03:01open in Malibu,
03:03and everyone just calls me
03:04Juno and I'll let Doctor Albert
03:07introduce themselves.
03:10Hi I'm doctor cash.
03:13So we're going to talk for a moment
03:16about what brings us to this work.
03:19Will then review some of the epidemiology of
03:22transgender and gender diverse populations.
03:24Some linguistics and terminology as well,
03:27and then move into how this all relates
03:29to cancer is specifically describing
03:31the experiences of transgender and
03:33gender diverse people with and without
03:36cancer and healthcare context all
03:38towards proposing a new model of how
03:40we think about bodies and how we.
03:42Think about the care that we're
03:46providing and moving away from
03:48oversimplified notions of sex or sex.
03:50Assigned at birth and being more
03:53broad and expansive to really
03:55take care of whole person health,
03:57and this will turn you know,
03:59finish with a discussion of how the Cancer
04:01Center could improve visibility, accuracy,
04:04inclusion some steps that you can take today.
04:07And then of course, the longer range,
04:09goals and activities our slides
04:10will be available to you,
04:12so there's a lot of.
04:13References and action steps as well.
04:16Don't worry about trying to capture all
04:18of those and will move to the next slide.
04:22We are also so very grateful to the
04:26following folks who have worked
04:28with us in in various capacities
04:31and whose insights and wisdom are
04:34shared here specifically.
04:36The transgender Cancer Patient
04:38Advisory Board that Doctor Albert
04:40works very closely with next slide.
04:44So we have no relevant financial
04:47disclosures to this presentation,
04:48but have been supported by some of
04:50the following grants and activities.
04:52They don't present any conflict here,
04:55and our job here really is to give you
04:58some of the foundational understanding
05:00of how invisibility in accuracy and
05:03exclusion among transgender and gender
05:05diverse people plays out in oncology
05:07and thereby foster future action
05:09and learning towards visibility,
05:11accuracy and inclusion,
05:12and ultimately towards HealthEquity.
05:15And so to do that,
05:17we really see these three objectives
05:19describing the exclusion of
05:20transgender and gender diverse people,
05:22and sensitize you to some of the
05:25health sequelae that follow.
05:27On from that exclusion,
05:29describe some conceptual frameworks
05:31that hopefully will be useful to you in
05:34your work and sensitization to these topics,
05:37including linguistic and systemic,
05:39come and support you in addressing
05:41health disparities by enhancing
05:43visibility and inclusion.
05:45And then to identifying some
05:47key steps that can be taken.
05:49So we wanted to start here by talking
05:53about some of the ways transgender
05:55people are often invisible in the
05:57medical landscape in our language,
05:59in our documents,
06:00and the effects that that has on
06:02transgender and gender diverse people.
06:05So two staggering statistics.
06:07Next slide, sorry, Doctor Albert,
06:09thank you for driving the slides.
06:14Or are these two that nearly one half of
06:19transgender people will attempt suicide in?
06:23Their lifetimes.
06:24It's a really staggering number.
06:26It's actually probably much higher
06:29given the poor data collection that
06:32we'll talk about here in a moment.
06:35And that's in comparison to 1.6% of
06:39the general population of adults.
06:42Actually, one transgender person
06:44is murdered every three days,
06:47so if these don't story,
06:48if these statistics don't grab your heart,
06:50you know and just bring you into this.
06:54We wanted to share a little
06:55bit more about our stories,
06:56so uhm and and we hope that this
07:00really starts to bring to visibility
07:03the interlocking systems of
07:05oppression that don't recognize
07:08transgender people's existence.
07:09And I'll start by saying that.
07:12You know I'm a cisgender queer woman, uhm.
07:16I live and move in LGBTQ spaces
07:19and had been for a long time and
07:22working and living in San Francisco,
07:25working on LGBT health and it was in my
07:28internship year when I really started
07:31to recognize how transgender people
07:34weren't considered even as part of
07:36that bigger umbrella of LGBTQ plus.
07:41It was an intern I was working in the in,
07:43in the ICU,
07:44and a transgender woman who was
07:46very well known to our hospital
07:48system came in with complications
07:50of her longstanding lung disease.
07:53Shortly after she arrived,
07:55UM,
07:56code processes began as she went
07:59into respiratory failure and
08:00as part of this process,
08:01she was undressed and when she was undressed
08:05it was noted that she had a penis.
08:07At that point,
08:09all code activities stopped.
08:10People lost their composure and
08:12critical activities were halted.
08:14People actually stepped away from
08:16the bed and there was this long,
08:18terrible pause where people lost
08:21their professional activities and
08:23all the steps that they should have
08:25been taking to help save her life.
08:28Concurrently,
08:28her wife was being called urgently
08:31and asked if she wanted extreme
08:34measures taken for her wife and
08:38our patient was misgendered,
08:40saying,
08:40you know whether we should sustain life
08:43or you know ** *** it and it was terrible.
08:46So at the point of her death this
08:50woman was dis respected and invisible
08:53ized in that you know her death
08:55wasn't seen as the death of a woman.
08:58In this setting,
09:00and that her wife takes that forward
09:03into thoughts and memories of what
09:06happened in the end of her wife's care.
09:09So this blatant disrespect and lack
09:11of human decency really propelled
09:13me to start to think about how I
09:16could do better and how we could
09:18all do better in medicine.
09:20With that I'm going to turn it
09:22over to Doctor Albert.
09:24Thanks for that very
09:26beautiful and moving story.
09:28So I'm ash I'm I'm nonbinary,
09:32and I'm here and I wanted to
09:33share a very different story from
09:35back before I actually even knew
09:37that I wanted to be a doctor.
09:39I was in college and about 20
09:42years old and I fell in love with
09:45somebody who is transgender.
09:47And I remember sitting at a
09:50dining table and listening to her
09:53tell the stories about her life.
09:55And I had this very strange sense
09:58that the world that I understood
10:00was was breaking open was changing
10:02and that everything that I thought
10:05that I knew about my gender and the
10:08genders of other people that I had
10:10taken as a given was in fact not a given.
10:13It was a very strange and scary feeling.
10:17But it was also incredibly freeing
10:20and that that person that I had
10:22fallen in love with was also very
10:24interested in issues of social justice.
10:26And it really felt like in that moment
10:30that I was seeing the possibility
10:32of a revolution and transformation.
10:35Later, when I was in medical school,
10:37I started doing qualitative
10:39research with LGBTQ plus people.
10:42And I noticed a similar feeling
10:44that the stories of transgender
10:46people in particular had in them
10:49the possibility of reviewing the
10:51assumptions of our medical systems and
10:53creating the possibility for change.
10:57So I'm hoping that what you'll hear
11:00today is both the urgency of making
11:02changes to our systems to save
11:04the lives of transgender people,
11:06and also the beautiful possibility that
11:08if we change our systems in these ways,
11:11we might also provide more nuanced and
11:13efficacious care for all of our patients.
11:18Turn it back to Doctor
11:19orbiting Alberta, continue.
11:22Thank you so much Doctor Albert for sharing
11:25your perspective and wisdom as always.
11:28So from the stories that you've just heard.
11:30What what will and what will present today?
11:32We want you to take away from
11:34some central concepts and themes.
11:36One is that systemic oppression
11:38which is experienced daily levels,
11:41leads to cancer disparities as it's an
11:44undercurrent of catalyzing other things
11:45that we know worse than the incidence,
11:48prevalence and severity of cancer.
11:52Invisibility,
11:53which is ubiquitous in our world.
11:56Just look, you know,
11:57at any magazine, any media.
11:59There's certainly more visibility of
12:01transgender and gender diverse people,
12:03but it's pales in comparison to binary
12:06assumptions about gender and who people
12:08are and how people move in the world.
12:11And this actually leads to data
12:12in accuracies for all people,
12:14not just trans people,
12:16and limits our understanding of
12:19how the world works, frankly.
12:21And we hope to demonstrate some of
12:24that and and more specifically leads to
12:27substandard care for transgender and
12:29gender diverse people and then stigma,
12:31which can be implicit or explicit,
12:34leads to poor experiences and outcomes.
12:35And we see that in many different
12:37characteristics and domains,
12:38but specifically we'll be talking
12:40about limited notions of gender here,
12:42and we'll see that these 3 threads run
12:44through the rest of our presentation.
12:46Next slide, but first.
12:47First thing is first we have to level
12:50set on a little bit of terminology.
12:52Likely many of much of this is
12:53familiar to many people in here,
12:55but without assumptions,
12:56these are some of the terms that we
12:59use LGBT sometimes LGBTQ plus LGBTQIA.
13:05Those are all meaningful different
13:08abbreviations, but broadly speaking,
13:09same for lesbian, gay, bisexual,
13:11transgender, queer questioning.
13:13The plus is really speaking to the fact that.
13:16The the diversity of communities that
13:19are not cisgender and not straight
13:22and or not straight up is broad and
13:25actually represented them more than
13:27just these few letters and subpopulations
13:30and so in recognition of that,
13:33actually academia has said we needed a
13:35bigger term to kind of get our arms around.
13:38The folks who are not cisgender
13:41and not and so this umbrella term,
13:43sexual and gender, minorities, or SGM.
13:46Is what's used in academic spaces,
13:49so not much really yet or at
13:52all by communities.
13:53It is used by the NIH and SGM people
13:56are recognized as a health disparities
13:59population for research by the NIH.
14:01Transgender term that we've used a number
14:03of times already in this population.
14:05Someone whose gender differs from that
14:07commonly associated with their sex.
14:09Assigned at birth,
14:11so that's in some ways the opposite
14:13of this other term cisgender,
14:16which again, really.
14:17Came from academia,
14:18which is someone whose gender is
14:19the same as is commonly associated
14:21with their sex.
14:22Assigned at birth,
14:23so I use that term in reference to myself.
14:25I said I'm a cisgender queer woman.
14:28That means I was assigned female
14:29sex offenders have what's commonly
14:32associated with typical female
14:34reproductive organs.
14:35I I challenged that terminology,
14:37but uterus, ovaries, dudes,
14:39etc and and identifies woman today.
14:43And then transgender man and woman.
14:46It's really important that we always use
14:48terminology that affirms peoples gender,
14:50UM,
14:50and a transgender man or man with
14:54transgender presumably assigned female
14:56sex at birth and non binary person who
14:59is not simply a man or woman may have
15:03multiple genders or outside of the
15:05non binary outside of a binary man,
15:08woman identity or girl boy identity.
15:12So these are some. Important terminology,
15:15one thing that will point out is
15:18that not everybody who is transgender
15:21uses that terminology for themselves,
15:23so really important to use the language that
15:26people use for themselves and reflect that
15:29back to people and and similarly cisgender.
15:32A lot of people who we would classify as
15:34just gender don't know that terminology.
15:37Don't use it, so there's a difference
15:39between when you're working with individual
15:41people versus doing research policy, etc.
15:45Next, slide for accuracy.
15:47We also need to discuss some foundational
15:50concepts and central to this is the
15:53understanding of sex or sex assigned
15:55at birth as distinct from gender.
15:57So sex assigned at birth is identification
16:00usually made by looking at external
16:03genitalia.
16:03In my field, often in at the time of birth,
16:07sometimes before birth, right?
16:08We're getting more and more information
16:10from ultrasound, genetics, etc.
16:11Often by healthcare providers,
16:13sometimes by parents.
16:15And that's a different from gender.
16:17Someone internal sense of themselves
16:18as a woman, a man, another gender.
16:22There are many more than one gender,
16:25and this also breaks down
16:27into gender identity.
16:29Clothes you wear.
16:30Sorry gender identity,
16:31which is something only you can
16:33know by inside your own head,
16:35right?
16:35You would have to ask someone and they would
16:37have to feel comfortable disclosing that
16:39to you for you to know their gender identity.
16:41Can't know it by looking at
16:43them versus gender expression,
16:44which is known.
16:45Or is something that is red and how we
16:48move in the world here makeup clothes?
16:51How we cross our legs,
16:52vocal intonations.
16:53Those are all markers of gender expression,
16:56and those don't necessarily quote
16:57UN quote line up in ways that we've
17:00tried that they traditionally do,
17:02and that's really different
17:03than sexual orientation,
17:05which is comprised of individuals,
17:07sexual attraction, identity behavior.
17:09So there's actually many components
17:11of sexual orientation as well,
17:13which may or may not quote a line so.
17:17Some lesbian women do have sex
17:19with men and that is a distinction
17:22between behavior and identity.
17:24There are many sexual orientations,
17:26and people have both a sexual
17:28orientation and a gender identity,
17:29and we need to think about
17:32those as different domains OK,
17:34and make sure that as clinicians
17:38and administrators,
17:39but that we are really teaching
17:41and distinguishing between sex
17:42assigned at birth and gender,
17:44they are so commonly completed.
17:46In medicine and research.
17:48OK, next slide.
17:49So some of you at this point
17:51might be wondering.
17:52Gosh great lots of concepts here,
17:54but how important is this?
17:56How common is this?
17:58Why am I listening maybe?
18:01And wanted to present a little
18:03bit of that began genealogy,
18:05so I've talked about this bigger
18:07umbrella LGBTQ plus and current
18:09research would say that you know,
18:13actually,
18:13the most accurate question answer to the
18:16question of how many LGBT people are there,
18:18or how many transgender people are there?
18:20Is that we don't know because
18:22most research Census,
18:24American community surveys,
18:26all these others.
18:27Don't ask people systematically.
18:29Their sexual orientation,
18:30sex assigned at birth.
18:31And gender identity for us to really
18:33understand who's in our population.
18:35However, we have some data and we
18:38think of these as floor statistics,
18:41not as a ceiling because not everybody
18:44feels comfortable answering questions
18:45like from a random digit dial are.
18:48So these data which come from Gallup
18:51show that 7% actually over 7% of adults
18:55in the US today identify as LGBTQ plus.
19:00It's more than all the children of
19:02five and under in the United States,
19:04including 20% of Generation Z adults,
19:08and among that 1% are transgender.
19:10So next slide.
19:13And if we look a little bit more
19:14closely into the transgender
19:16population and epidemiology,
19:17we see that overall about 1%,
19:19or which translates to at
19:21least 1.8 million people.
19:22And we do know that there's a
19:24difference by age and generation,
19:26and the numbers here.
19:27But there's really good evidence
19:29to suggest it's not necessarily
19:31that population prevalence
19:32statistics are changing,
19:33but rather there are real differences
19:35in terms of comfort with disclosure,
19:37changes in understanding and
19:40representation of various gender
19:42norms and concepts of gender.
19:45We do see that in the youngest generation,
19:47one in 50,
19:48or identifying as transgender,
19:50and we know that that's a lot less
19:52than probably who is and and thinks of
19:55themselves and or has the experience
19:57of being trans one really important
19:59thing is that trans and gender diverse
20:01status is not unique to a particular age,
20:03race, ethnicity,
20:04income,
20:05bracket or education level,
20:06and many people have multiple identities,
20:09so the take home is you are
20:11taking care of transgender people
20:13whether you know it or not.
20:15And it really is critical that
20:17we all work to make sure that
20:20our spaces are welcoming.
20:21And with that I'm going to
20:22pass it to Doctor Albert.
20:27So while we have limited data
20:29regarding cancer incidence and
20:30outcomes for transgender people,
20:32many aspects of the lives of transgender
20:35people may predispose us to increase
20:37cancer morbidity and mortality.
20:39For example, the majority of trans
20:41people who were out or perceived as
20:43transgender in schools experienced
20:44some sort of mistreatment,
20:46and one in five dropped out as a result.
20:49One in five transgender women will
20:52be incarcerated in their lifetimes.
20:54One out of three transgender people were
20:56fired in the last year or experience
20:58some sort of mistreatment at work.
21:00One out of three transgender people
21:02will experience homelessness one
21:04out of three are living in poverty.
21:06One out of two experienced
21:08sexual assault in our lifetimes.
21:10One out of four or unable to
21:12access hormone therapy because
21:13of lack of insurance coverage.
21:15One out of five transgender people will
21:17participate in the underground economy,
21:19including in sex work.
21:21One out of two black and Latino
21:24trans women are living with HIV.
21:27One out of two transgender people
21:29are currently experiencing mental
21:31distress and mental illness.
21:32And so you can imagine that the indirect
21:35and direct effects of some of these
21:37things lead to increased cancer morbidity.
21:39Mortality,
21:40for example,
21:41increased rates of HIV related
21:44malignancies and HPV related malignancies.
21:48Transgender people also have
21:50negative experiences with physicians.
21:52And that likely also leads to
21:54barriers to care.
21:55So you can imagine that if one in three
21:57trans people had negative experiences
21:59with physicians in the last year.
22:02That it makes sense that a number
22:04of transgender people would not
22:06present to healthcare for regular
22:08preventative care and cancer screening,
22:10and also that people may not
22:12have symptoms evaluated.
22:14So if people aren't presenting to care,
22:16this likely leads to presentations with
22:19later stage cancers and worse outcomes.
22:22And in fact,
22:23Sarah Jackson recently published some data.
22:26Suggesting that that's in fact the
22:28case that transgender people with
22:30specific types of cancers present late
22:31and have worse outcomes as a result.
22:36We frame our research and
22:37scholarship within a conceptual
22:39model that acknowledges the ways
22:41that interactions between oncology,
22:42clinicians and transgender people with
22:44cancer are affected by the structure,
22:46culture and policies of the
22:48institutions in which we find ourselves,
22:50as well as the systems policies
22:52and social context around us.
22:54So because of that understanding and
22:56changing the experiences and outcomes
22:58of individual patients will require
23:00not just us learning more and changing
23:02the ways we interact with people,
23:04but also changing the systems
23:06and policies around us.
23:09For example, guidelines of organizations
23:11like ASCO and NCCN impact research,
23:14clinical practice,
23:16and institutional policies,
23:17and ultimately the experiences
23:19and outcomes in patients.
23:21For this reason, Doctor Overton,
23:22Malaver and I have been working
23:24closely with NCCN and ASCO
23:26to change guidelines to be
23:27inclusive of transgender people.
23:29In other words,
23:30to acknowledge transgender people
23:31in our language and the ways that
23:33we're thinking about guidelines.
23:37Similarly, transgender people are also
23:39impacted by state and national policies.
23:41So for example, this is a map
23:44representing Medicaid policies
23:45that cover gender related care,
23:47such as hormones or surgeries.
23:49And so, although this hasn't been
23:51investigated as far as we know,
23:53these policies likely also change
23:55people's access to cancer screening
23:58and and other types of care.
24:01So you can imagine that the
24:03experiences of transgender people
24:05living in state Connecticut,
24:07where Medicaid policies coverage
24:08under related care might be very
24:11different than the experiences
24:13of transgender people and their
24:15primary care doctors and their
24:17oncologists living in Texas.
24:19With that,
24:19I'll turn it back to doctor over
24:20and over to explore this further.
24:24Thank you and so one of the things that
24:27we need to ask ourselves as providers
24:30is how can we signal to transgender
24:33and gender diverse people that the
24:35space is the clinical spaces that we
24:38are offering are places that are safe
24:41for them to disclose their identity
24:44and to have a welcoming experience.
24:48And so I want to propose this model of the
24:51four doors that that has been very helpful.
24:54I think to easily start to think about and
24:57do a landscape analysis of your own setting.
25:00So the first question is what happens
25:03when someone comes in your door?
25:05What is the signage that
25:07they're seeing the graphics on?
25:09The the wall? Is it?
25:11If it's a place where you are
25:13primarily taking care of uterine,
25:15ovarian, tubal cancer,
25:18is that the Women's Cancer Center
25:21or are the is the signage all pink?
25:25These types of things same with
25:27breast cancer and we'll see more of
25:28this later then and are the people
25:31who are taking insurance cards.
25:33People who are parking folks,
25:35people who are rooming individuals
25:38comfortable with working with
25:40people of all genders.
25:42Next, what happens behind closed doors?
25:44And I think Doctor Albert,
25:47if you can click once,
25:48I think those four that that great.
25:50Thank you so much.
25:52So then what happens behind closed doors in?
25:54Histories and physicals,
25:55and the information that you're asking,
25:57are you asking about gender
25:59affirming processes and procedures?
26:00Thinking about who someone
26:01is in their totality?
26:03The next is what happens.
26:05Even if you've done all of that
26:06work in your own specific clinical
26:08space and behind closed doors
26:09in your history and physical,
26:11what happens when you were
26:12first and went out to another
26:14department or another institution?
26:15How's that information carried forward
26:17in a real and respectful, accurate way?
26:20And then finally,
26:22what happens to welcome people
26:24into the door so?
26:25Not just that,
26:26we are taking care of transgender and
26:28gender diverse people by happenstance,
26:30but really making ourselves
26:33a destination of choice.
26:35Next,
26:36so one of a group of colleagues
26:39and I wanted to address the fact
26:42that many organizations have really
26:45recognized non discrimination
26:46policies as a good marker and signal
26:50to communities and reflection of
26:52the culture of an institution,
26:54of how they're taking care
26:56of different communities,
26:57including the LGBTQ plus community.
27:00And so we performed a web based analysis
27:02to evaluate the landscape of patient
27:04nondiscrimination policies at NCI.
27:06Designated cancer centers and
27:08we found that while 82% of
27:10cancer centers had a patient,
27:11non discrimination policy that was
27:13accessible in their website in 90% mentioned,
27:17protection by sex and 70% by
27:20sexual orientation a little
27:23less 67% by gender identity,
27:25none of the policies included sex assigned
27:28at birth or LGBTQ plus or SGM identity,
27:31and so a big.
27:34is that there are actions that we
27:37can take that are feasible and
27:39within our control to help signal
27:41and make spaces more welcoming.
27:43We'll talk about a little bit
27:45more of what happens
27:47when spaces aren't welcoming
27:49through the qualitative research
27:50that we've both conducted,
27:52and there's some illustrative
27:53quotes and experiences that Doctor
27:55Albert will go through next.
28:02Go ahead, OK. Thank you so much.
28:05So now we'll get into some of the
28:07details of what happens to patients
28:09when they present to clinic,
28:10and we'll be presenting from both
28:13of our qualitative research,
28:14and there'll be a few themes that
28:17will describe throughout this
28:18section and the first one is that
28:20our institutions themselves may not
28:22be welcoming of transgender people,
28:24and may actually inadvertently exclude them.
28:27So I'm going to read a quote from a
28:31project I did exploring the experiences
28:35of transgender people with cancer.
28:37So one of the participants who was a
28:39white non binary person said I needed
28:41to have a lot of follow up mammograms
28:44until I had top surgery and pretty much
28:46every time this wasn't aggressively
28:49gendered experience to the point of no,
28:51I'm not putting on that pink floral gown.
28:53You can't make me.
28:54You can do it in nothing.
28:55I'll put on this rap I have or
28:57you can get me. Something else,
28:58but I'm literally not doing this.
29:01And having to push back really hard against.
29:04I don't want to change in the
29:05special woman to changing room.
29:07I don't want to hang out in
29:08the special goal mammogram.
29:09Word. Thanks Shirley.
29:10This is a whole hospital.
29:12No doubt you have other places I could
29:14sit and you can imagine that you know
29:18already experiencing a cancer diagnosis
29:20and dealing with treatment and the follow up.
29:23It may be very difficult to
29:25be in spaces and be given.
29:27Clothing to wear that.
29:30Explicitly are in,
29:31in contrast to how you see yourself.
29:35So not only do we need to change
29:37how we're talking to people,
29:38but the the institutions in which we work.
29:43Another way that cancer centers may
29:45signal inclusion or exclusion to
29:47patients is through our intake forms
29:48and what happens at registration.
29:50For example,
29:51in another study of Latina Trans,
29:53Woman said, starting with how to identify,
29:55you don't have options during registration.
29:58It's easy for me to sign in as a woman,
30:00but then the provider ends up
30:02asking me inappropriate questions.
30:04For example, when was my last period,
30:06or if I might be pregnant?
30:09And if somebody is asking about
30:11your last period,
30:12or if you might be pregnant,
30:13you're put in a situation.
30:15If you're a trans woman to have to
30:17either lie or or come out to someone
30:19who it may not feel safe to come out to,
30:22and then after somebody asked
30:23you that question,
30:24it may be even more difficult to.
30:28To choose to explain to them that
30:30you're transgender because they've
30:32already signaled that they don't
30:33know that or think that you're.
30:36Existence is a real thing.
30:41So the language used by oncology
30:42clinicians may also not reflect the bodies
30:45or experiences of transgender people.
30:47For example, a weight nonbinary participant.
30:50Said, I remember somebody saying it's OK,
30:53you're still a woman.
30:54You can probably still have children.
30:56Thank you. No thank you.
30:59And so I'm sure that clinician was
31:01really trying to, you know, create,
31:03build, repor and be close to the
31:06patient by by making this statement.
31:08But in fact, really made an assumption
31:11that was in fact not the case,
31:13and they have eroded reform made it even
31:16more difficult for that person to be there.
31:21Similarly, in a study about sexual
31:22and reproductive health care,
31:24transgender participants said if you start
31:26out the conversation talking about female,
31:28this or woman that are only male and female,
31:31just a simple statement of female
31:34reproductive system or whatever.
31:35It's just so triggering for gender,
31:37expansive folks and trans
31:39people that it's like,
31:40regardless of what comes after that,
31:42there's already a disconnect.
31:43It's like this person is basic and
31:46they don't understand who I am.
31:52So clinicians are taught to think
31:54about gender and sex as synonymous,
31:56and because of that they may
31:57tend to get the names, genders,
31:59or pronouns of patients wrong.
32:02This is called misgendering and this may be
32:05even further exacerbated when clinicians
32:07know that patients are transgender.
32:09So in one of our qualitative studies,
32:11transgender people talked about
32:12their experiences after physicians
32:14found out that they were transgender.
32:16And for example,
32:18one black transgender woman said
32:20it wasn't until after I told the
32:22Doctor that I was on hormones for
32:24transition that I started being keyed.
32:26In other words,
32:27the physician started referring
32:28to her with he pronouns and
32:30his accidental or whatever.
32:31As it was, it was after.
32:34Before that it was she.
32:37So in other words,
32:38transgender people may face a very
32:39difficult dilemma of choosing between
32:41the dangers of being open about their
32:44identities and the dangers of not
32:46giving clinicians all the information
32:47they may need for clinical decision making.
32:50For example,
32:50that they're on hormones,
32:52or that they've had particular surgeries.
32:56In the same qualitative study,
32:58we investigated the experiences
32:59of transgender people who reviewed
33:01their own electronic health records,
33:03and we felt that this was very important
33:05given the 21st Century Cures Act,
33:07which mandates patients
33:08access to their own records.
33:11To nearly all the patients in
33:12our study who had accessed their
33:14electronic health record noted,
33:16the use of the wrong name
33:18pronounced gender marker.
33:20Often referred to as misgendering,
33:21which I which I think I mentioned.
33:24So even in the context of otherwise
33:26positive relationships with clinicians,
33:28and even when clinicians displayed
33:30other signs of being welcoming.
33:32They described the seeing
33:33misgendering or stigmatising
33:34language in the electronic health
33:36record really eroded their trust,
33:38not just in that particular clinician,
33:40but the medical field as a whole.
33:44So for example,
33:45one participant said there's like stickers
33:48that are like LGBTQ affirming blah blah.
33:51Yet they both misgendered me in their notes.
33:56And many people in the study did
33:58talk about their performative,
33:59but sometimes performative
34:02nature of inclusiveness.
34:04So it brings up the question
34:05of how we can really like,
34:07be authentic and all the places
34:09we're communicating with patients.
34:11Participants also describe the
34:13intersectional nature of transphobia
34:15and racism through use of the word such
34:18as hostile or aggressive in the health
34:20records of transgender people of color.
34:23For example,
34:23one chicken X nonbinary person
34:25described the ways that those
34:27words were carried forward and
34:29used against patients they said.
34:31In the electronic health record,
34:32those details that people added in the notes
34:35can definitely get used against the patients,
34:37especially if you're a person of color and
34:40you're trying to be enforcing pronouns.
34:41You'll usually get labeled as hostile,
34:44and then that establishes a pattern
34:46near medical record that then is used
34:48to treat you poorly or should not
34:50be listening to what you're seeing.
34:52And in fact,
34:54there's other literature that supports some
34:56of these concepts because we know that.
34:59From that research,
35:00we know that negative language in the
35:02electronic health record influences
35:04the attitudes of other clinicians and
35:06causes them to treat patients differently.
35:08For example,
35:09to treat pain less aggressively.
35:11So these these things are very concerning.
35:15Oncologists are also trained to
35:17follow guidelines. As you all know,
35:19but these may not always be in
35:21line with patients priorities,
35:23for example NCCN.
35:26Prioritizes fertility sparing
35:27interventions that may not be in
35:30line with the needs of patients and
35:33particularly transgender patients.
35:35And we don't always have a lot of
35:37guidance about what to do when guidelines
35:39are different from patient priorities.
35:41So for example,
35:42a white non binary person with
35:44ovarian cancer said because
35:46I had a really large tumor.
35:48They talked about doing the full hysterectomy
35:50or just taking out the one ovary.
35:52I wanted the full hysterectomy
35:54and they were like you don't know.
35:56In a few years you might change your mind
35:58so they did fertility sparing surgery.
36:03Hum. It's very. It was very distressing,
36:06especially in that focus group that
36:08this person had gotten this surgery that
36:10was not the one that they wanted and
36:12really brings up the question of how
36:14we can really share decision making of
36:16patients and center their priorities
36:18and making decisions about their care.
36:22Last concept that we wanted to
36:24introduce in this section is that
36:26oncology clinicians may be providing
36:28incomplete or inaccurate information
36:29because of the simplistic ways,
36:31clinicians and systems we work
36:34in manage information regarding
36:36gender anatomy and Physiology.
36:38So one concern is that we have very
36:40limited data regarding the health
36:42outcomes of transgender people with
36:44cancer and any role that hormones may
36:47play in improving or worsening outcomes.
36:50And I think this is a concern for
36:52patients and clinicians as well.
36:53So for example,
36:54one transgender woman in one of our
36:56studies said it was good in one way
36:58that the doctors had no issues with
37:00me continuing hormones and that they
37:02thought about it in relation to cancer.
37:04And they were like no, no problem.
37:05Go ahead, it's fine.
37:07But there is no really good
37:09critical thought about, oh,
37:10you're going through this major
37:11hormonal shift at the same time as
37:13you're going through chemotherapy,
37:14and there wasn't any discussion about that.
37:17It's like, OK,
37:17you let me do what I needed to do,
37:19and you didn't interrupt that.
37:20Portion of my transition,
37:22but you didn't give me any information
37:24you didn't even try to think critically
37:26using your doctorate knowledge.
37:30One problem clinicians may have and
37:31having these types of conversations
37:33with patients is that the data
37:36regarding connections between hormone
37:37therapy and cancer are of very poor
37:40quality and it may be difficult to
37:42know how best to counsel patients.
37:44So for example, in the last few
37:46years there were two studies
37:47out of the Netherlands that both
37:50had retrospective data regarding
37:51cancer risk for transgender people.
37:53Transgender women specifically.
37:55And this one got a huge amount
37:58of media attention,
38:00partly because of this sentence
38:01that was in the popular press.
38:03That trench and the woman had a 47 foot
38:06higher risk of developing breast cancer.
38:08But as I mentioned,
38:10these studies were both retrospective,
38:12so correlative and and there was no like
38:15ability to establish a causal relationship.
38:18And also what was less well publicized
38:21is that transgender women in these
38:23studies have lower rates of breast
38:25cancer than cisgender women.
38:28So it it brings to mind how the media
38:31may be influencing our conversations
38:33with patients and what what we do
38:36in the absence of quality data.
38:39Around the same time this study came
38:41out that was looking at prostate cancer
38:43risk and transgender women and found
38:45lower rates of prostate cancer and
38:46transgender women compared to standard men.
38:49And interestingly,
38:50this study got almost no press attention.
38:54Which brings up,
38:55you know what's what's in our mind
38:57because of the popular press and what does
38:59that do to our conversations with locations?
39:01So we know that hormone therapy and surgeries
39:05decrease suicidality for transgender people
39:07who want them and improve quality of life.
39:10So when having these
39:11conversations with patients,
39:12it's really important too.
39:14Understand patients priorities and to
39:16weigh the known benefits of hormone
39:18therapy and surgeries with the unknown
39:20but potential risks of hormone
39:22therapy in the setting of cancer.
39:28The systems that we work in also have
39:29been set up to deal with gender and
39:31and sex assigned at birth data in
39:33various simplistic ways that do not
39:35extrapolate well to the bodies of
39:37transgender people and other patients.
39:39So for example, the laboratory data
39:41normal ranges are based on research
39:44done on cisgender women and men,
39:46and research suggests that transgender
39:47people have a normal lab values
39:50that fall outside of these ranges.
39:52So this ends up meaning that the lab
39:54values in the charts of transgender people
39:56are often flagged even though it may
39:59not be of any clinical or other significance.
40:03So consider a transgender man who's
40:05registered as a man and flagged as anemic,
40:08but is actually not because he
40:10meant straights and so has a
40:12half a non pathologically lower
40:13hematocrit than cisgender women.
40:17And this did come up in one of our
40:19qualitative studies have changed under
40:21man said when I get labs done they
40:23have me as female for my lab levels,
40:26and so they're always a little bit
40:28off and it freaks me out and I'm
40:30like is this normal and it is very
40:32difficult that patients who now have
40:33access to their medical records,
40:35as well as clinicians or left to
40:37interpret these for themselves.
40:40Possibly even greater concern,
40:42chemotherapeutic dosing is sometimes
40:44based on creatinine clearance which is
40:46based on the sex or gender marker and
40:49we don't have robust data regarding
40:52how these algorithms apply or do not
40:54apply to transgender people who've
40:56had surgeries or on hormone therapy.
40:58So in the future,
41:00we could consider revising our laboratory
41:02ranges to be based on more objective
41:04measures that would be relevant,
41:06such as volume of distribution,
41:08body composition, hormone levels,
41:10renal or hepatic function,
41:12or a host of other factors that
41:15influence drug metabolism clearance.
41:20And so, with all of those really
41:23important voices and stories in mind,
41:25and building on this idea of where
41:27where oncology practice may be missing,
41:30a mark is that our systems
41:31may be holding us back.
41:32So this is a screenshot from my EMR use epic,
41:37in which one of my patients
41:39that I was taking care of,
41:41a nonbinary patient of mine who had
41:44mail listed in their medical record,
41:47assigned female at birth,
41:49had a cervix.
41:51Needed contraception and and I was
41:54taking care of them for cervical
41:55dysplasia and I got you know this
41:57this hard stop saying this diagnosis
41:59of dysplasia of the cervix uteri
42:01is not valid for the patients X
42:03which of course was not true.
42:05I was performing the exam
42:07person was in front of me.
42:09It's very valid for their experience
42:10but I was not allowed to charge
42:12and that's obviously a problem
42:14just for that individual patient.
42:16But then if we extrapolate out it hinders
42:18care more broadly and also hinders research.
42:21As medical charting,
42:22diagnosis codes,
42:23etc are the foundation of much
42:25research endeavors, Qi Work etc.
42:28Next slide please.
42:29So it's really important that we
42:32cease the traditional conflation
42:34of sex and gender and we need to
42:37disaggregate these important concepts
42:38of the organs that somebody has at
42:41birth and currently which of course
42:43may differ both for transgender
42:45and gender diverse people as
42:47well as cisgender piece people.
42:49And disaggregate that from somebody's
42:51gender identity which we do need to know.
42:53It's not just about origins but
42:54we need to know and take care of
42:56somebody's gender identity as
42:58well as their sexual orientation.
42:59And actually we have a rubric you
43:01know in medicine to do these things.
43:04We systematically go through
43:05and we ask medical history,
43:07surgical history, meds, family etc.
43:09But we need to be sensitized to
43:11how we bring gender into that and
43:13how we bring gender affirming care
43:14and processes and experiences of
43:16transgender people into all of those
43:18components 'cause they influence.
43:20Every single one of those,
43:21and I bring up this picture
43:23partially 'cause I'm in OB GYN,
43:24but also because I think it's a really good.
43:28Just visual model to consider which is
43:31the picture on the left are two gay men.
43:35One is a transgender Kaden in
43:37the front who's carried 2 carried
43:40and given birth to two children
43:42that he and his partner Elijah,
43:44a cisgender gay man.
43:48Have and they're partnering together
43:50and and we can only imagine that
43:52their experiences are quite different
43:55as two black gay men raising kids,
43:57then this presumably white cisgender
44:00couple that we see who I actually don't know.
44:03But we're just,
44:04you know,
44:05in terms of all of these different
44:07multiplicity of experiences,
44:08and we need to ask and think about
44:10how those differences will play out.
44:12And unfortunately there's a lot
44:14of missing data,
44:16and in accuracies here that we
44:17need to start to debunk.
44:19And address so next slide
44:21you know if we think
44:23about research, this is a.
44:27Just a presentation of some
44:29inclusion criteria from a clinical
44:31trial about prostate cancer,
44:32and if you look on the left,
44:34the inclusion criteria,
44:35says male greater than 18 years of age.
44:38But what about women who may
44:40also have prostate cancer rate?
44:41Transgender women and also,
44:43you know participants must agree to using
44:46condom if they having sex with a woman.
44:48So what do they mean by sex and
44:51what do they mean by women here?
44:54There are obviously assumptions of
44:57that are threaded throughout this,
44:58and in addition in terms
45:00of the exclusion criteria,
45:01they mentioned hormone
45:02therapy for prostate cancer.
45:04But as Doctor Alpert mentioned,
45:06we know actually the transgender woman
45:08likely have lower prostate cancer,
45:09at least in one study.
45:11We need more studies right?
45:12And So what about estrogens for transition?
45:16Finally,
45:16when we think about excluding people,
45:18current infections such as HIV.
45:21Unfortunately,
45:21currently transgender women have very high.
45:25Prevalence of HIV,
45:26and so we may be excluding whole swaths
45:30of population who still get prostate
45:33cancer despite also having HIV.
45:35So who's being included,
45:36who's being excluded and we need
45:39to think very strategically about
45:41this so that we're providing
45:43accurate and inclusive care.
45:44Next slide,
45:45please.
45:46So we reviewed with some colleagues
45:49ovarian cancer guidelines and we noticed
45:51the word woman appears 100 times.
45:53It's just one example,
45:54but you can imagine.
45:55These guidelines will not promote
45:57use of gender consistent language
45:59with people's identities for men
46:01or nonbinary people with ovaries,
46:03and you can imagine that providers
46:05then aren't sensitized.
46:06How to take care of people?
46:09And this was the case of Robert EADS,
46:11a man pictured here on the bottom,
46:13who was turned away from 12 oncologist
46:16office for treatment of this
46:18ovarian cancer because they said
46:20that they didn't know how to care
46:22for a man with cancer essentially.
46:24Next up, similarly,
46:26we looked at prostate cancer
46:28guidelines and sort of the same story.
46:30UM,
46:30the word men appears 472 times,
46:33rather than being specific to the organs,
46:35and in that way it wouldn't have really
46:38provided helpful guidance to taking
46:40care of someone like Sally pains here,
46:43who a woman of trans experience
46:45who died of prostate cancer,
46:47and so we have to really think about
46:50what we're putting out and how this
46:52just isn't meeting our population,
46:54so.
46:54One example of potential practical
46:57alternatives is represented here,
47:00where you know the concern for
47:02risk reducing self inject me alone
47:04is that people with at least one
47:06over it 'cause actually that's
47:08the most relevant piece right?
47:09Not women 'cause they could
47:11have ovaries or not, right?
47:12So it's just the presence of the
47:14ovary or people who menstruate
47:16versus pre menopausal women.
47:18So we need to get much more specific.
47:22Next slide,
47:23so as you go back to your day
47:25as we start to close up here,
47:27we want you to just start to
47:29critically assess your own materials,
47:31your own space and think about
47:32you know is what
47:34you're putting out there inclusive.
47:36Exclusive thinking,
47:36certainly about gender but also race,
47:38ethnicity, skin color, age,
47:40gender, ability and size,
47:42and so this can take you into thought,
47:44experiments and and really,
47:46looking at what elements of the
47:48visuals in your clinical settings
47:50promote inclusion and in what domains.
47:52And what images, decoration, signage etc.
47:56Promote exclusion and in what domains?
48:00And the real promise here is
48:01that we can get it right, right?
48:03So you know.
48:05This is also from one of our
48:08research studies where Doctor
48:10Albert study actually said,
48:12you know, as soon as a trans man
48:14I know talked about his gender
48:17experience with his gynecologist.
48:18They were very careful to not use
48:20gender language during exam and
48:21it was all very matter of fact.
48:23They actively took steps to
48:25minimize any chest exposure,
48:26referring to chest tissues,
48:28breasts and things of that nature,
48:30and this is a promising quote,
48:33but it also would encourage us to not.
48:36Wait for us to know you know that this
48:39is a trans person that we're supporting,
48:42but rather just to make all of our
48:45practices welcoming and inclusive.
48:47With that,
48:47I'll turn it back to Doctor
48:49Albert to finish us out here.
48:52So some good news is that ASCO actually
48:54is making changes to their guidelines,
48:57and recently we changed the guideline
48:59template to ensure that all the
49:01guidelines that are created are done
49:02so with gender inclusive language.
49:04So if you want to,
49:06you can scan these QR codes to see
49:09both the new methodology manual and
49:11the first guideline that came out using
49:14gender inclusive language and with
49:16comments about why that's being done.
49:18So there are a number of next
49:20steps that Yale cancer can take,
49:21and these are just some of our ideas.
49:23But really, we want you all to be
49:26thinking about what what you think
49:28would work best for your center.
49:32And then you know,
49:33we talked earlier about EMR best
49:35practices and we would recommend
49:38fees that patients needs genders,
49:40pronouns, or correctly and consistently
49:42documented throughout the EMR.
49:44That words like preferred or identifies
49:46as and describing patients, genders,
49:48pronouns, or names are eliminated.
49:51And that words that may suggest
49:54stigma or blame like disturbed or
49:56hostile or removed from the record.
49:58We would also suggest based on
50:00the recommendations of patients
50:02avoiding unnecessary mention of
50:03sex assignment or so called.
50:05Biological sex,
50:06because often those things can
50:09be communicated by describing
50:12anatomy or other factors.
50:14We also listed some individual
50:16some steps for individuals,
50:18and these slides will be available after,
50:20so I won't go through these in depth,
50:22but we wanted you to have you know
50:24something you could do right now today
50:26to change your practice and change
50:28the practice at your institution.
50:34And then here are some training and
50:36resources that are available for any
50:39Cancer Center in case you want to
50:41do more work around these topics.
50:45And we want to remind oh sorry,
50:47Doctor Overton Oliver.
50:48Yeah, well we we all live in society
50:50today and I think it would be hard if
50:52if you hadn't noticed the news that
50:55there are some very active fights going
50:58on for trans transgender and LGBTQ.
51:00Plus people broadly.
51:02Just to mention that there are 147 anti
51:05transgender bills that were introduced
51:07in 2021 that are being either addressed
51:10or seen now and just two weeks ago,
51:13Idaho House approved legislation
51:14that makes it a felony.
51:15For doctor to provide gender affirming
51:18care and so we as as citizens
51:21need to also be taking a taking,
51:23care and thinking about these things and
51:26advocating because it influences our
51:28patients and it influences our society.
51:30And then the last plug I'll put
51:31in here just my own little plug is
51:33if you have LGBTQI plus patients,
51:35we really encourage you to ask them
51:38and to be involved in research and
51:40so one way it just one study is
51:43the PRIDE study which you can.
51:46Learn about here pridestudy.org,
51:48which is the next slide.
51:50And with that,
51:51I think we'll move to questions and
51:53then know that there's actually dozens
51:56of slides after this that gives some
51:58more information and resources, etc.
52:00So we encourage you to check
52:02out those slides as well,
52:03and our contact information
52:04is here on the next slide,
52:06as well as an evaluation we you know good
52:10for each of our portfolios into in to,
52:13you know,
52:14enhancing our future talks.
52:15So thank you so much for your kind attention.
52:20Thank you so much. So
52:24I just want to really thank you for
52:27your vulnerability first of all and
52:29sharing your own stories, and I'm really.
52:33Giving us the language to start
52:36enacting change and and I really
52:39I think my own take away is,
52:42you know we want our patients
52:45to feel seen and I think we want
52:48you know in language matters.
52:50And so I think so I thank
52:53you for that fantastic talk.
52:55So I'd love to turn to chat
52:58with a couple of questions.
53:01Some were we had a couple
53:03on EHR so one was on.
53:05Thank you for this informative session.
53:07Do you know if any hospitals or
53:09cancer centers have a process to
53:11flag inappropriate EHR notes and to
53:13address the behavior and fix them?
53:18No review can address that. The
53:20short answer, at least from my end,
53:22is no. I don't know of any such.
53:25Policies or procedures in place
53:27to to manage this sort of data.
53:31Yeah, I don't either, but I
53:33think that our patients are
53:35telling us already and so it's kind
53:37of starting from the education place
53:38that we don't fix it. And then we do.
53:41All can be champions now,
53:42so I often notice it and colleagues notes
53:45and I gently pointed out to them and say,
53:48hey, maybe this is a template, but you
53:51gotta fix the template so or you know.
53:55Patient, you know,
53:56came back to me or other patients
53:58have come to me to to not,
53:59you know and say hey can you fix this?
54:02I notice this is inconsistent
54:03throughout the record.
54:05Yeah, exactly and Doctor Albert if you
54:08don't mind sharing and then maybe we
54:10can see bigger perfect that's great.
54:12Thank you for the last.
54:13We'll have five five more
54:15minutes and for questions has I?
54:18I also there's a question about
54:20clinical trial eligibility,
54:21and I think as a Cancer Center,
54:23that's a primary mission
54:24of ours and I think I,
54:26I loved that you brought that up and
54:28you know we have eligibility around
54:31doing pregnancy tests and eligible.
54:33So really, I think.
54:34It's great to raise that,
54:36so one of the questions is has
54:38there been a review of clinical
54:40trial eligibility criteria
54:41for appropriate inclusion?
54:46So again, I don't.
54:47I don't know of any such research,
54:49although I think it would
54:51be wonderful to do that.
54:52We we really, you know,
54:54did these looks at the guidelines in
54:57clinical trial data in preparation for
55:00some conversations with NCCN and FDA.
55:02But I think a more rigorous look at
55:05maybe even a qualitative analysis
55:06or natural language processing tool
55:08to look at inclusion and exclusion
55:11criteria for cancer clinical
55:12trials would be really super would
55:15really potentially give us more.
55:17More data to drive change and
55:20bring these issues to the floor.
55:24Yeah, and I would say in all research
55:26you know we we really need to think
55:29about what we're measuring and why.
55:31So it's actually not appropriate
55:32to just say women, right?
55:34Because if if, say,
55:36you're doing a study on uterine cancer,
55:37only people with uteruses can be,
55:40you know, have uterine cancer develop it,
55:43but that could be transgender men.
55:45It could be nonbinary people.
55:46It can't be somebody who lives
55:48as a woman who was born with a
55:51congenital absence of the uterus.
55:53Actually inaccurate,
55:54so we really wanna say,
55:55you know anybody who has or had a you
55:57know a uterine cancer or depending
55:59on the criteria and just to be
56:01very specific and it may be that
56:03it's really only relevant for you.
56:05Know cisgender women,
56:06but we need to so state and say why right?
56:09And we also need to think retrospectively
56:12about research and point this out as a
56:15limitation where we are extrapolating.
56:17You know I'm extrapolating from studies
56:20on cisgender women to view this.
56:23Transgender man in front of me
56:25and this is the areas that I don't
56:27understand right now and so we
56:29need to partner around that.
56:30This is mechanistically how
56:32I think XYZ would work.
56:34I don't know you know,
56:35and and we're working to fill that in.
56:38And so,
56:39that's that's what the NIH is calling for,
56:41and I would challenge every researcher
56:43here is familiar with the NIH, you know?
56:46A requirement on describing sex
56:49as a biological variable,
56:51and so.
56:52In that statement we need to actually,
56:54you know,
56:55carry that forward and really be critical
56:57and and and what that's really asking for.
57:00And I routinely,
57:00my NIH grants say I can report
57:03on sex assigned at birth.
57:04I cannot report on gender.
57:06I will not report people by men and women
57:08'cause that's actually irrelevant or.
57:11You know some other permutation
57:12depending on the specific research.
57:16Great, thank you.
57:18There's an interesting
57:19question on a chaperoning.
57:22By Doctor Kim, one of our
57:23Gu medical oncologists.
57:24So what are your thoughts
57:26on the use of chaperones for
57:28examining transgender patients?
57:33Well, I think we should think about,
57:35you know. Where it's a great question,
57:39but I think I always like to think what
57:41am I gonna do routinely to make situations
57:44better for everybody and so likely there
57:46is a place where a patient advocate
57:48may be good for every person, right?
57:51So I'm often as an OB GYN who
57:54identifies and reads as as a woman.
57:57Often women patients don't
57:59think anything of it,
58:00but then as soon as a male or male
58:03presenting colleague of mine comes in,
58:05they think about that, but.
58:06You know there's actually nothing to
58:08say that I may be, and I hope I never am,
58:11but inappropriate or do something
58:13sexually inappropriate with a woman
58:14patient just because I'm a woman.
58:16And so if we we should think probably
58:19about chaperoning for everyone.
58:21Understanding that more people in
58:22the room may or may not be better.
58:24And so I think we need to think
58:26about that and or I often have
58:28partners in the room chaperones.
58:29I often have a nurse in the
58:31room for everybody, actually.
58:35I, I think that's a wonderful comment,
58:37so we are nearing the hour in
58:40the final minute remaining.
58:42I'd love for both of you,
58:43maybe in kind of 1 sentence to say
58:47what you are hoping the field will do.
58:50Leave us with kind of a
58:53a dream for the future.
58:55Doctor Albert will start with you.
58:58Yeah, I mean, I think that in my mind
59:00the most important thing right now is to
59:02rethink the ways that we have conflated
59:04gender and sex assigned at birth,
59:06and if we can disaggregate those
59:08ideas and concepts both in the ways
59:10that we're talking to patients and
59:12thinking about bodies, but also the
59:15ways that we're writing guidelines,
59:17thinking about lab values,
59:18thinking about chemo,
59:20therapeutic dosing,
59:20I think will really change the landscape,
59:23not just for transgender people,
59:24but to provide better care
59:26for all our patients.
59:29Thank you Doctor Obit in malver.
59:31Absolutely so many things.
59:32First of all, just thank you everybody.
59:34Uhm, I would say that. It really.
59:38There's often this sort of doom and
59:40gloom kind of idea about working with and
59:43supporting transgender and gender diverse
59:45people who do face so many challenges.
59:47But I also think incredibly strong and
59:50resilient communities who actually have
59:51so much to show us about all of our
59:54medicine and healthcare and and and the
59:57assumptions that we make that really are
59:59a detriment to all of our patients, right?
01:00:02So we could learn so much about you know,
01:00:04hormone management about mechanisms of.
01:00:08Presence or absence of certain experiences,
01:00:10hormones, organs, etc.
01:00:12That and really what transgender
01:00:14and gender diverse people offer us
01:00:17is this incredible gift to examine
01:00:19our assumptions and to become much,
01:00:22much more accurate and actually
01:00:24precise in our health.
01:00:26So this is truly precision,
01:00:27health and meeting people and the
01:00:29diversity people where we're at.
01:00:30And if we can decode the genome,
01:00:32we can actually meet individuals
01:00:34where they're at all these axes of
01:00:37their identities and experiences.
01:00:39To provide really excellent care.
01:00:42Thank you, well thank you both of you
01:00:45for really a fantastic presentation
01:00:47and one that I hope our listeners will
01:00:50have some really concrete takeaways and
01:00:53really become advocates in this space.
01:00:55So I thank you for that.
01:00:58Doctors open in Malvern.
01:01:00Albert have agreed to stay on for
01:01:02the next hour for our trainees,
01:01:04so I encourage the trainees to stay on.
01:01:06But I think if there are other
01:01:08people who would enjoy staying
01:01:09on we would welcome that.
01:01:11You will be so stay on.
01:01:12You will be promoted to host so
01:01:14that everyone can see each other.
01:01:16Doctor Barbara Burtness is here
01:01:17as our associate director of DI
01:01:19for the Cancer Center and will
01:01:21be leading the next session.
01:01:23So thank you everybody so much.
01:01:30Thank you for that, that wonderful.
01:01:35Tour and completely, I think different
01:01:40to the the kinds of grand rounds
01:01:43talks that we have often hosted.
01:01:46So it's it's particularly wonderful that
01:01:49you're willing to to stay on and field
01:01:52questions and and have some discussion.
01:01:58With with the fellows, so let's
01:02:00just give them a minute to join.
01:02:03Do you know when ash I'm going to sign off,
01:02:05but that was just amazing and I it's so
01:02:08great to see you both and I hope we can
01:02:12continue some collaborations and so I know
01:02:15our fellows will get a lot out of this.
01:02:16So thank you for agreeing to both
01:02:18of these sessions. I appreciate it.
01:02:19Absolutely thank you. Again,
01:02:21thank you so welcome. Bye bye bye.
01:02:32Hi Doctor Burns hi. Doctor Alpern,
01:02:34Dr within Melbourne.
01:02:38So yeah, I was.
01:02:40I was going to introduce you.
01:02:41Ben is one of the chief.
01:02:46And his has actually been amazing
01:02:48in the role we've introduced ADEI
01:02:50curriculum to our fellowship,
01:02:52sort of under his leadership. Purple
01:02:56great, very exciting.
01:02:59I have to apologize.
01:03:00The timing did not workout so great
01:03:02or the scheduling did not workout
01:03:04so well because. Are actually
01:03:07in service. Exam is also
01:03:08today, so portion
01:03:09of our fellows are
01:03:11unfortunately unavailable by I think
01:03:14we do have trainees from some of
01:03:17the other training programs as well.
01:03:19And in addition to hematology oncology.
01:03:23Both. So I wonder if we if the
01:03:26people who are still on if we should
01:03:28go around and do introductions.
01:03:31Or if there's another way we should start.
01:03:37It would also be great to the
01:03:39extent that some of you can come.
01:03:42Turn your videos on. Uhm?
01:03:47I I was, you know, thinking that we
01:03:49would do this in a very informal way,
01:03:51if that's OK with the two of you and.
01:03:57You know, I, I know when
01:03:59you're putting together a talk,
01:04:00even as a single speaker,
01:04:01there's all kinds of stuff
01:04:02you have to leave out.
01:04:03And then when there are two of you so
01:04:07there there may be things that you want
01:04:10to go into in in more depth as well.
01:04:13But so I'll I'll start.
01:04:15I'm Barbara burtness.
01:04:17I'm a medical oncologist.
01:04:19And I'm the interim associate
01:04:22director for DI and.
01:04:25Trying to build a
01:04:28educational environment that.
01:04:30Fosters culture change here.
01:04:40Ben, we already introduced, I guess, Nick.
01:04:45Uh, I presume this may hello.
01:04:49I am a fifth year pH D
01:04:51candidate in the Townsend lab.
01:04:53Do a lot of cancer work
01:04:55in computational biology,
01:04:56and I was a trainee of the
01:04:59cancer biology training program.
01:05:04Julia.
01:05:09I am Julia. I'm a
01:05:11fourth year medical oncology fellow.
01:05:15Doing breast cancer, clinical
01:05:17care and research and will be
01:05:19a breast medical oncologist.
01:05:24Wonderful to see you shine.
01:05:28I just wonder why external advisors?
01:05:29But it's great to have you here. Well,
01:05:32I had this on my calendar
01:05:33'cause I got the permission.
01:05:34I'm not sure how, but I was thrilled.
01:05:37This is a wonderful presentation.
01:05:39My name is Shawn Chang.
01:05:40I'm a cancer epidemiologist on
01:05:42faculty at MD Anderson Cancer Center.
01:05:44I also am a training program director for our
01:05:47cancer prevention research training program,
01:05:49and I'm also an multiple pie of a
01:05:52new course for skills development.
01:05:55We don't have.
01:05:57Not officially got an hour.
01:05:59No gay yet,
01:06:00but our project is to provide early
01:06:03career researchers with cancer education.
01:06:07Cancer Research orientation
01:06:08for those who are interested
01:06:10in SGM Cancer Research, so.
01:06:17Great, thank you.
01:06:18I'm just calling on people as you
01:06:20appear on my screen. Mark Casey.
01:06:28And Renee, I don't know if you
01:06:31want to come. Turn your video on.
01:06:33Renee is our communications
01:06:34director in the Cancer Center.
01:06:42Sure, hi everyone we met
01:06:44earlier before Grandma started.
01:06:45So thank you again for doing this.
01:06:48By helping support. Saidul
01:06:54hi, my name is stagel.
01:06:55I am one of the first year hematology
01:06:58oncology fellows here and I am interested
01:07:00in providing care for the young
01:07:03adult early onset cancer population.
01:07:09Eileen
01:07:19OK, some people maybe.
01:07:22Oh Eileen says her desktop
01:07:24does not have a micro camera.
01:07:28OK, thank you for joining us and I'm Liz.
01:07:37Stop. Can't hear you this.
01:07:50OK.
01:07:53One last person is David Schoenfeld.
01:07:55One of the fellows.
01:07:57David, if you want to just
01:07:59briefly introduce yourself, sure.
01:08:00Hi, my name is David. I'm one of the
01:08:02third year fellows on the research track,
01:08:04so I have a couple more years left.
01:08:06I'm working with Harriet Cougar
01:08:08during kidney Cancer Research
01:08:09and interested in immunotherapy,
01:08:11and I just want to thank you for the very
01:08:13wonderful and interesting talk today.
01:08:16Thank you, so I'm sorry closing now.
01:08:19Oh yeah, yeah we can.
01:08:22Sorry I'm I'm sorry about the lecture.
01:08:25Much like Shine,
01:08:27I got forwarded to me somehow.
01:08:28I'm actually at the Ohio State
01:08:31University I'm James Cancer Hospital.
01:08:33I am an advanced practice nurse
01:08:34and nurse scientist doing research
01:08:37in this area and so when I saw that
01:08:39I do now and ask for presenting,
01:08:41I had to listen in.
01:08:42So I'm just eavesdropping to
01:08:43to hear what else is going on.
01:08:45So thanks so much. Great, OK,
01:08:48well maybe the first thing I'll
01:08:51do is just ask if people have
01:08:53questions that they want to throw
01:08:56out and and if not I have a few so.
01:09:05Doctor Burtness, do you want
01:09:06people to throw their questions
01:09:08into the chat or should we just
01:09:09kind of throw into the form of us?
01:09:11I think people can just.
01:09:12I mean, for those of you who have no Mike,
01:09:15Eileen, postdoctoral fellow in
01:09:17translational oncology in the room lab,
01:09:20part of the CBTP training program,
01:09:23her mic is off,
01:09:24so she will ask her to use the chat,
01:09:26but for those of you who who can,
01:09:28I think I'd like this to be
01:09:30conversational and and interactive.
01:09:32If that's OK with everybody.
01:09:34Yeah.
01:09:37Quick question, I guess I'll I'll kind
01:09:39of give you 2 two lines of thinking and
01:09:42let y'all go down whatever Rd you feel
01:09:46like one is about like the there are.
01:09:51Traditionally, different approaches
01:09:52to care for different diseases,
01:09:54often based on these sort of
01:09:57section formed approaches.
01:09:58And trans people, you know cancer
01:10:01is a disease that that thrives on,
01:10:03like just disruptions and signaling.
01:10:07And it seems like there's a lot
01:10:08of for people who elect to have
01:10:11like a medical and hormonal sort
01:10:13of aspect to their transition.
01:10:18There might be some places where,
01:10:22without you know, necessarily
01:10:23undergoing entire clinical trials,
01:10:25you can adjust the the sort of
01:10:28dosage and care of people based off
01:10:31of what we know about signaling.
01:10:32So I wanted to know if if
01:10:34there was any thoughts about.
01:10:37That or the the the other thing that comes
01:10:40to mind is the need for like because.
01:10:44Medical record and even a
01:10:46medical ontology or like.
01:10:48Require this labeling and hierarchical
01:10:51structure in order for them to
01:10:53just sort of technically function.
01:10:56How is that like?
01:10:57What?
01:10:57What are some tips for addressing
01:10:59trans folk who don't necessarily
01:11:02like applying labels to themselves,
01:11:04especially in ways that don't that
01:11:07aren't founded in medical jargon,
01:11:10I should say.
01:11:13I mean, I can speak to
01:11:15the second question first.
01:11:16I think the first question it
01:11:17might be helpful, at least for me,
01:11:19to get a little more detail about the
01:11:21sort of scenarios you're thinking about.
01:11:23But in terms of the second question,
01:11:25I mean what I can say kind of like
01:11:28broadly is that we know from our
01:11:31qualitative research that oftentimes
01:11:32part of what is helpful and what
01:11:35trans people want is to share the
01:11:37decision making around what is
01:11:39in the electronic health record,
01:11:41and to know, you know, the the.
01:11:43Pros and cons of various decisions.
01:11:44So there may be, you know,
01:11:46various implications to the gender
01:11:47marker in the chart or the other
01:11:49demographics that are there,
01:11:50including issues related to insurance
01:11:53coverage and billing issues in terms
01:11:56of being out and who's accessing
01:11:58the the medical record.
01:11:59So what a lot of people have
01:12:01said in our studies is, you know,
01:12:03I really appreciated when my
01:12:04physician said I need a diagnosis
01:12:06to prescribe hormones,
01:12:07what would you like that diagnosis to be?
01:12:10Or brought up other issues like that.
01:12:14And then yeah,
01:12:15I think in terms of your first
01:12:17question about signaling,
01:12:18I think I would.
01:12:19I would appreciate any specific
01:12:21scenarios that you're thinking of to
01:12:23try to answer your question better.
01:12:28Yeah, I mean there are.
01:12:30It's it's hard 'cause there.
01:12:31It's like there's a thousand different
01:12:32treatments for 1000 different things,
01:12:33but even just thinking like
01:12:35there's speculative roles
01:12:36and pathways for things like.
01:12:40Ben, Jeff isoforms and how they're
01:12:44different among physiological signaling.
01:12:47And thinking about like the Jeff inhibitors
01:12:50as a as a key aspect for him for preventing.
01:12:53Vascularisation and metastases and and
01:12:56cancer, like if there is some some sense in
01:13:01which medically transitioning trans folk.
01:13:03Have physiological states that
01:13:06are neither like are in between or
01:13:09somewhat liminal and signaling states.
01:13:11If there are ways to adjust dosages to
01:13:14represent that sort of liminal state.
01:13:22Well, I would say that's really why
01:13:24we need more inclusion in research,
01:13:26because the the challenge right now
01:13:29is that there are definitely trans
01:13:32folks in clinical cancer trials,
01:13:34but we can't see who they are.
01:13:36We don't know that you know they're
01:13:38dosing on various hormones.
01:13:39We don't know when they're going on
01:13:41and off and kind of cumulative dose,
01:13:43and so we don't know how that's
01:13:45informing things.
01:13:45And so we need to, you know,
01:13:48at the very fundamental level and ask.
01:13:51In respectful, real,
01:13:52relevant ways so that we can get
01:13:55much more specific and understand
01:13:57instead of just saying men and women.
01:13:58I mean we,
01:13:59we all know you know cisgender men have a
01:14:02broad range of you know testosterone levels.
01:14:05Cisgender women have a broad range
01:14:07of estrogen progestin levels, and we
01:14:09there's a lot we don't know about that.
01:14:11But if we're really going to
01:14:12get into precision health,
01:14:13we really need to think
01:14:15for everybody like we,
01:14:16we gotta be doing this better, right?
01:14:17Like why is there a preponderance of
01:14:19certain cancers that are certain hormonal?
01:14:21Dates or whatnot,
01:14:21and so actually this is the opportunity
01:14:23that I was trying to speak to.
01:14:25Is that trans people actually really?
01:14:27Present us this incredible opportunity
01:14:30to understand more about these
01:14:32various components specifically
01:14:34as it pertains to cancer care.
01:14:38I think you know where we are.
01:14:40Some hormones, estrogen, progesterone,
01:14:42testosterone, positive, right.
01:14:43But what does that mean for somebody
01:14:46who's going on and off or was actively
01:14:49using blockers or other things?
01:14:51And how does that then?
01:14:53What does that teach us about the
01:14:55mechanisms of how these neoplastic processes?
01:14:58Advanced,
01:14:58but we just don't have that.
01:14:59We don't have those models sorted
01:15:02out yet for anybody,
01:15:03so if we could really deliver on this promise
01:15:06of more accurate inclusion of variables,
01:15:08and I'm really rethinking and
01:15:10not just saying men and women,
01:15:12right?
01:15:12But really rethinking from
01:15:14an ontological perspective.
01:15:16What is what are the
01:15:18questions that we're asking?
01:15:19So that we can get our arms around,
01:15:22everyone will learn a lot more
01:15:23for everybody's cancer care,
01:15:24I think.
01:15:30Maybe just just building off that.
01:15:33I mean you you've referred
01:15:36to ASCO and NCCN and and FDA.
01:15:39A lot of the most impactful
01:15:42clinical trials and cancer recently
01:15:44have been industry studies.
01:15:47And you know, they obviously
01:15:50right things that FDA will be.
01:15:53Will accept.
01:15:55But unless there's a mandate
01:15:56from FDA to change things,
01:15:58my experience is that they are very
01:16:01comfortable continuing to do things
01:16:04exactly the way they did them in 1975, and.
01:16:08I'm just wondering have have there
01:16:12been formal conversations with?
01:16:14Big Pharma and or have you been
01:16:16involved in in writing studies
01:16:18in with industry partners?
01:16:21Where?
01:16:22You've attempted to to address.
01:16:27Inclusion in eligibility criteria.
01:16:31No, I mean I can say that
01:16:33you know about a year ago,
01:16:35the FDA did convene like a sexual and
01:16:38gender minority like one day workshop
01:16:40where we did start to talk about some
01:16:43of these issues and in fact are writing
01:16:45a manuscript to talk about how we
01:16:47would suggest changing clinical trial,
01:16:49inclusion and exclusion criteria,
01:16:50and a myriad of other factors
01:16:53to really better.
01:16:54Get data that can be extrapolated to
01:16:56all people, but I don't know of folks.
01:17:00I don't know of folks who are working
01:17:02with industry to figure out how to
01:17:04make that more widely disseminated,
01:17:06and I don't really know.
01:17:09What all the steps would be in
01:17:11trying to create an FDA mandate?
01:17:12I know that the FDA has issued some
01:17:16guidance around exclusion criteria
01:17:17as it relates to HIV diagnosis,
01:17:20and I think like similar.
01:17:23Strategies could be employed to talk
01:17:25about some of these other issues,
01:17:26but I.
01:17:27I am not 100% sure what the way
01:17:30forward will look like,
01:17:31but I am very interested to to
01:17:33figure that out and to work with
01:17:35with all of you too.
01:17:36Build something better than
01:17:37what we currently have.
01:17:41And there are efforts from the FDA,
01:17:43so building on what Doctor Albert
01:17:45just mentioned, I think that you
01:17:48know it's a slow process and there's
01:17:50a lot of areas of of unknowns.
01:17:52But the FDA actually born out of the Office
01:17:55of Women's Health has been looking at
01:17:57this and what I put in was a presentation.
01:18:00Actually that was done and hosted by the FDA
01:18:04from the Office of Women's Health two years,
01:18:08three years ago now.
01:18:10In their slides where they you know
01:18:11they say sex is not gender and
01:18:13they and they start to like,
01:18:14you know break that apart.
01:18:15So I think that there is increasing awareness
01:18:17and I think you know it's it's kind of
01:18:20like a bidirectional challenge, right?
01:18:21Like we we needed to come, you know,
01:18:23from the FDA we needed to come from
01:18:25researchers who were saying like
01:18:26this doesn't work and challenging
01:18:28that and and there's office.
01:18:29This handshake,
01:18:30especially in academic medical centers where
01:18:34industry initiated studies still work with,
01:18:37you know,
01:18:38academic colleagues to.
01:18:40To run them and and vice versa so
01:18:42you know if there's challenges
01:18:43coming from all different directions,
01:18:45I think that's how we can start
01:18:47to move forward.
01:18:50Great, thank you.
01:18:54I have a quick
01:18:54question specifically about the
01:18:57types of cancers that are hormonally
01:18:59driven in their pathophysiology,
01:19:01and also that depend on
01:19:04hormones for our treatment.
01:19:05So thinking about breast cancer, my field.
01:19:08Uhm? Would you have any?
01:19:13Suggestions in terms of of how to deal
01:19:17with that potentially conflicting?
01:19:21Mechanisms of. For example,
01:19:25are treatments for breast cancer
01:19:27that might be directly conflicting
01:19:29with with a medication that
01:19:31someone is taking for transition.
01:19:35How do you handle those situations?
01:19:42So I mean, I think that you know all
01:19:45people have hormones in their body.
01:19:47You know exogenous or endogenous hormones,
01:19:50and there are various ways that
01:19:51we feel like we need to to change
01:19:54hormone levels in patients based on
01:19:56the type of cancer that they have.
01:19:58So I think just like all people
01:20:01with hormones talking about,
01:20:02you know the risks and benefits
01:20:04of continuing to have the same
01:20:05levels of hormones in your body.
01:20:07So I think in the case of like an
01:20:09estrogen receptor positive breast cancer
01:20:12for a trans woman on estrogen therapy,
01:20:14I think probably the conversation is
01:20:17very similar to a cisgender woman who
01:20:19needs to go in a room at ACE inhibitor.
01:20:23But I think that.
01:20:24What I think can be really important
01:20:27is just making sure that we're.
01:20:30Understanding patients priorities
01:20:32understanding their their concerns.
01:20:35Talking about the real data that we have,
01:20:37even data that we need to extrapolate
01:20:39and then like making a joint decision.
01:20:42I've definitely heard transgender people say,
01:20:46you know, I'd rather.
01:20:47This is like services, different scenario,
01:20:49but like I'd rather die having had
01:20:51the surgery that I wanted than than
01:20:53not having had it so I think the
01:20:55best that we can do for our patients
01:20:57is talk about risks and benefits
01:20:59of any intervention in therapy and
01:21:00then like work with them to make the
01:21:03decision that feels best for them.
01:21:06Thank you.
01:21:08I think there's also.
01:21:09There's just this added
01:21:10piece of like if it is, say.
01:21:12A breast cancer in a transgender man
01:21:15who's already had top surgery, right?
01:21:17Like understanding that there's like this
01:21:19whole other potential layer may or may
01:21:22not be relevant for anyone individual,
01:21:24but of like you know,
01:21:25or you trinkets or for a transgender man,
01:21:28you know that there may be
01:21:30this other layer of like God.
01:21:32This piece of my body and experience
01:21:35that may not be like in line
01:21:38with my identity is now this.
01:21:43You know is now gonna kill me or
01:21:45potentially you know these kinds
01:21:47of questions come up for people.
01:21:48Now that's not true for everyone.
01:21:50And I that's actually something I
01:21:52was very surprised about in in my
01:21:54work on pregnancy and fertility
01:21:55in transgender expensive people,
01:21:57I expected you know,
01:21:59along before I did my first
01:22:00study on pregnancy experiences
01:22:01and and trans masculine folks,
01:22:03that everybody would have a bad
01:22:05experience with being pregnant.
01:22:06And, you know,
01:22:07that was just my assumption going in.
01:22:08And then a lot of people,
01:22:09didn't, you know, they're like,
01:22:10yeah, I'm a pregnant guy.
01:22:11What's the deal like I have this organ?
01:22:13It works, it's.
01:22:14How I became a father,
01:22:16so you know.
01:22:16But then certainly people did have this
01:22:18for it and some people were like yeah,
01:22:19I just you know stomached through this very,
01:22:23you know woman.
01:22:24Gendered experience of like dealing with
01:22:26this organ that everybody associates with
01:22:28motherhood and womanhood and whatever.
01:22:31So for some people you know I really am
01:22:34working with them and saying, like, yeah,
01:22:37I know that this is this added element of.
01:22:40A gendered experience that
01:22:41doesn't work for you?
01:22:42How can I support you in that?
01:22:44For some people it's like,
01:22:45well, cancer just sucks.
01:22:46So like we're just gonna deal with that.
01:22:49But knowing that you know there's
01:22:51there's a potential there that it
01:22:53has this additional element and
01:22:55it's really just about meeting
01:22:57that person who's in front of you?
01:22:59Knowing that you know discrimination,
01:23:01stigma,
01:23:02and pervasive gender norming is
01:23:05at play in most scenarios and and
01:23:08being willing to talk about that.
01:23:10So like when I send somebody for a
01:23:12transvaginal ultrasound, I say hey,
01:23:14how do you feel about that like is is that?
01:23:17You know, have you ever had one?
01:23:18Are you concerned about it?
01:23:20Some people like Nope, not a problem.
01:23:21Some people like.
01:23:22Yes, I don't wanna be, you know,
01:23:24there's no way and and I do that
01:23:27with my cisgender patients too,
01:23:28you know?
01:23:29So I just like that's something that
01:23:31actually I've learned from a lot of trans
01:23:32people to really stop and slow down.
01:23:34Like what are we doing to your body?
01:23:35What are my assumptions here?
01:23:37How am I talking about these procedures?
01:23:39Is this gonna meet you?
01:23:40Is this gonna affirm you?
01:23:42How can I make it better?
01:23:54Ash and you know,
01:23:55I don't know if you could.
01:23:57See what was in in the chat,
01:24:00sure, but Eileen had a question.
01:24:05About bystander intervention and any advice
01:24:07for trainees to interrupt gently correct,
01:24:10more senior colleagues and and then actually.
01:24:15Really resonated with with me as well,
01:24:19because we've had a lot of conversations
01:24:21here about just people really
01:24:23don't know what to say and they.
01:24:25Yeah, so maybe you could address Eileen's
01:24:29question as globally as possible.
01:24:33Funny that that question just
01:24:35showed up in the chat because
01:24:37I was actually just thinking of
01:24:39asking the trainees if they'd like to
01:24:41share any experiences they've had,
01:24:43like this one where they're seeing maybe
01:24:47patients being treated in a stigmatising way,
01:24:51or they themselves have experienced
01:24:53stigma from patients or colleagues
01:24:55because I think that these
01:24:57conversations are so important to have,
01:24:59maybe not even as a question and answer.
01:25:01But how can we all talk collectively about?
01:25:04These experiences and and what we're
01:25:06doing about them because I think that
01:25:08I know that this is something that I've
01:25:10struggled with throughout medical training,
01:25:13so I would love to hear any
01:25:15experiences you all want to share.
01:25:18Both about like situations that have
01:25:20been difficult or how you manage them.
01:25:34Maybe maybe I can start so actually
01:25:37one this is. This was one question,
01:25:39one topic I want to bring up this
01:25:41question of like my standard.
01:25:44Scenario isn't training and I I
01:25:46guess I don't have one specific
01:25:49example specifically about
01:25:52sexual minorities that comes
01:25:54to mind, but what I can say
01:25:55is that in all of our previous
01:25:58discussions during this the the DI
01:26:03series that Doctor Bernice had mentioned
01:26:05this is the number one question that
01:26:07always comes up and one of the most
01:26:10important topics of discussions is.
01:26:12You know what, what?
01:26:14What are actionable items and how
01:26:16can we go out on an individual level.
01:26:19Making changes in the environment.
01:26:23So I don't know that I have
01:26:25like a specific example,
01:26:26but it is something that
01:26:28hopefully we can discuss further.
01:26:30Maybe other folks have some
01:26:31examples to provide as well.
01:26:33I know it comes up all the time.
01:26:36I think we see it on a daily basis
01:26:37in terms of gender discrimination.
01:26:39More broadly in terms of.
01:26:44You know, underrepresented minorities
01:26:47in both clinical and also
01:26:49professional academics and situations.
01:26:52Yeah, I was actually shined.
01:26:54Gonna just call you out because
01:26:56you put in this comment.
01:26:59You know that you're sort of grateful
01:27:01that you don't have to face this in
01:27:02the clinical space, but I wonder if.
01:27:08Speaking up as a bystander isn't pretty
01:27:12similar in many different arenas.
01:27:16And you know,
01:27:18I think that there are components.
01:27:20There's there's sort of role playing.
01:27:22There's practicing.
01:27:23There's learning how to to speak up.
01:27:25There's being part of a community
01:27:26where everybody speaks up,
01:27:27so that gets modeled for you.
01:27:30There's affirming people who speak up,
01:27:34and, you know,
01:27:35giving them some credit for it.
01:27:36But just from your training perspective.
01:27:41You know, I'd I'd love to hear
01:27:44what you owe and Junos just
01:27:46put in a thing about Stanford,
01:27:47stand up or upstander training, but
01:27:52that's very cool.
01:27:53I've just clicked on it and
01:27:55will be sharing that with our
01:27:58trainees to thank you for that.
01:28:00So my training program we are starting
01:28:05to work more on impostor phenomenon
01:28:08ability mindset and perceived
01:28:10discrimination and the intersection
01:28:12of these experiences with our with
01:28:16regard to training research trainees,
01:28:19but the conversation here is about if
01:28:21I understand more correctly that it's
01:28:24really more about like in a clinical
01:28:26setting and you know how to sort of
01:28:29manage that power dynamic if you're.
01:28:31Seeing something happen and how to intervene.
01:28:34So this is sort of the, you know,
01:28:36just as Juno sent us about upstander
01:28:40or bystander intervention so.
01:28:43I'm not very good at this.
01:28:45I'm still learning how to you know
01:28:47what many tools there might be,
01:28:50but one of the things I always
01:28:52think about is asking questions.
01:28:54You know, oh, I didn't understand that.
01:28:57Could you explain more about that?
01:28:59Things like that.
01:29:00One of the things I was about I was typing
01:29:03Barbara when you were calling me out,
01:29:05there it was.
01:29:07Something I used when I was a postdoc,
01:29:08which is to request in service
01:29:11training for everyone.
01:29:13So I wonder if maybe you know junior
01:29:16colleagues trainees can ask for in
01:29:18service for everyone on these topics.
01:29:20How can we do better?
01:29:22How does this affect our patients?
01:29:26How can we support each other?
01:29:27And so once the request is made and once
01:29:30it is delivered then people have a more
01:29:33common basis for having these conversations?
01:29:36Because then you can remind each other.
01:29:38Oh, remember at that you
01:29:39know workshop that we have.
01:29:41We talked about this.
01:29:42Oh,
01:29:42let's you know blah blah blah.
01:29:45So I have a lot to offer but I think that
01:29:49perhaps there might be others who have.
01:29:51You know,
01:29:52some training or better training
01:29:54and we can request their help.
01:29:56Out.
01:29:57Juno, can you tell us
01:29:59about the Upstander life?
01:30:02Yeah, so this is an initiative out of
01:30:05Stanford and really recognizing this,
01:30:07you know that that this is, I think,
01:30:10just like you were mentioning.
01:30:12This was like the most common thing that
01:30:14was coming up and so the response was
01:30:16to really like how do I help people?
01:30:18And recognizing that like by standards
01:30:21or what through this training is
01:30:24called up standards or hopefully
01:30:26to champion people like actually
01:30:29acting and being engaged and being.
01:30:32Champions through being upstanders UM
01:30:35is moving away from just by standards,
01:30:38and that those are the often the
01:30:40largest percentage of people in the
01:30:41room or who are witnessing things,
01:30:43and that that's actually those are
01:30:45the folks that need to be mobilized
01:30:48to really create culture change.
01:30:50But how do we do that?
01:30:51And so this was Stanford's response to.
01:30:55You know people ask him for tools
01:30:58and and department by department.
01:31:00These trainings are happening
01:31:02and it's really.
01:31:04Did initiate in terms of sort of thinking
01:31:08about discrimination and sexism in in
01:31:11sort of the most traditional concepts
01:31:13and and thinking about equity for women,
01:31:16and then has has broadened out to
01:31:19really recognize diversity across
01:31:20the gender spectrum and other
01:31:22axes of identity and difference.
01:31:24So actually across the traditional,
01:31:28like quote, UN quote, traditional,
01:31:29like sexism and racism were like.
01:31:31Kind of the two pillars that
01:31:32people were like.
01:31:33How do I say something now that I'm sort of?
01:31:35Sensitized and and now people have understood
01:31:38that this that's actually broader than that,
01:31:40so this is, you know, sort of 1 approach.
01:31:43I think the big thing is,
01:31:44you know recognition and
01:31:45and talking about it.
01:31:47And I think also I really
01:31:50am empathize with trainees.
01:31:51I think trainees are in a really.
01:31:54Complicated situation and that
01:31:56that has to be recognized and that
01:31:59there are really intense power
01:32:01dynamics in the hierarchies of
01:32:03medicine where we could say Oh no.
01:32:04No talk about it.
01:32:05But there are sometimes
01:32:07there really are reprisals,
01:32:08and there really is backlash.
01:32:10And so we really understanding like what
01:32:14are safe spaces for people to to do that,
01:32:18and also noting that up standards there's
01:32:21a vulnerability there and people may be
01:32:23sensitized being up standards because it's.
01:32:24Part of their own identity or
01:32:26experience and then that may put
01:32:28people in a very vulnerable position,
01:32:30and so some some of the strategies around.
01:32:33You know, partnering with.
01:32:34Essentially,
01:32:35this is the place where allies.
01:32:38Come in, you know.
01:32:40So like if you are a white cisgender.
01:32:46You know able body person like
01:32:48really taking that step as a.
01:32:50You know when you see it,
01:32:52you know when I see it,
01:32:53it's like it's it's on me to act.
01:32:55If I'm seeing racism happening,
01:32:58it's it's so I'm seeing,
01:32:59you know, ableism happening.
01:33:00If I'm seeing really disparaging
01:33:03remarks around transphobia.
01:33:06Other things because I'm not as
01:33:08personally vulnerable and it's.
01:33:10Effectively,
01:33:10therefore easier for me and takes
01:33:13that burden off my colleague who is.
01:33:16In in even more vulnerable situation,
01:33:20that having been said,
01:33:21you know thinking about how that's done,
01:33:23so it doesn't. Take away or you know.
01:33:28Do it in such a way that that disempowers or.
01:33:33Takes voice away from individuals and
01:33:35or comes in as a savior, you know?
01:33:37So it's. It's not easy.
01:33:38If it was easy,
01:33:39it would have already been solved,
01:33:40but I think just this like active training,
01:33:43we get trained on so many things, right?
01:33:45Like so this is active training.
01:33:46We all need to do and challenge
01:33:48ourselves to do everyday.
01:33:51If I could just make a personal comment to
01:33:54the junior people and I I'm by no means,
01:33:56am I suggesting that you go
01:33:58out and you know become target.
01:34:01Practice for people in power but.
01:34:04If you don't say anything,
01:34:06then 30 years later you're working
01:34:08in the same crappy environment that
01:34:10you hated when you were training.
01:34:12Plus it's on you that you
01:34:14never said anything you know,
01:34:16and I think I was a generation
01:34:20that felt like.
01:34:21Well and and I really I came right
01:34:23after the class action suit first class
01:34:25in my medical school that was 50% women.
01:34:28First class of interns at Yale that
01:34:29was 50% women like I was right
01:34:31at that time and I think we had
01:34:33this naive idea that as long as we
01:34:35could show that we could do all the
01:34:37work the same as everybody else,
01:34:40it would work out.
01:34:41And you know, 30 years later,
01:34:43that's clearly not what happened, right?
01:34:45And so you know, absolutely you have to,
01:34:49you know, be careful.
01:34:51But I also think there is a burden
01:34:54on you keeping quiet as well.
01:34:57Be pile
01:34:58onto that comment, Barbara.
01:35:00I think that often we think as
01:35:03individuals that we have very little
01:35:06power and and sometimes that's true.
01:35:08But what I have learned,
01:35:10especially being an empty neologist,
01:35:11is that when we band
01:35:13together and we collect data,
01:35:14we have a huge amount of power.
01:35:17And I love that slide that Ash and
01:35:20Juno that you shared at the beginning
01:35:23about I wrote it down actually
01:35:25about how systemic oppression.
01:35:28Leads to disparities and invisibility
01:35:31leads to in accuracies and
01:35:33substandard like yes yes yes.
01:35:35And we can dispel that with data.
01:35:38So when junior people band together
01:35:40and they and they say, oh we,
01:35:43we took a survey of all the residents and
01:35:46fellows and we found a very you know,
01:35:49high level of dissatisfaction with.
01:35:51Turns out the people in leadership.
01:35:53They kind of quake in their boots.
01:35:55You know they really don't
01:35:57like that kind of thing.
01:35:58And so.
01:35:59Sometimes it's about recognizing
01:36:00that you do have power,
01:36:02but you have to harness it.
01:36:03You have to collect the data
01:36:05and then you have to have a
01:36:06unified voice to make a request.
01:36:09That's what I was saying about you know,
01:36:12being able to.
01:36:13You know,
01:36:14ask for things you ask for the in service.
01:36:19You know I'm coming from a junior level.
01:36:21It's appropriate for you to ask
01:36:23for for in service stuff that then
01:36:25benefits everybody so you can have
01:36:27your hidden agenda that will,
01:36:29you know, help fix the world.
01:36:31But you know,
01:36:32be sure to tap into the power
01:36:34that you actually have.
01:36:35So I you know I,
01:36:37I tried to tell this to students
01:36:38as well because students often
01:36:40feel like they have no power.
01:36:41And I say actually you have so much power.
01:36:44Because the faculty hate when you are
01:36:46unhappy because it causes trouble for them.
01:36:48So same for you.
01:36:50Know people in training
01:36:52all people in training.
01:36:53It's really important.
01:36:55And yeah,
01:36:56there are dinosaurs at the top
01:36:57and in leadership,
01:36:58but they're also advocates
01:36:59and champions as well.
01:37:01So you just have to find them and get them
01:37:03to help work from all different directions.
01:37:05Just like Ashland, you know we're
01:37:07saying it has to be everybody together,
01:37:09not just the leaders or the
01:37:11seniors or whatever.
01:37:12That's what I used to think
01:37:13when I was a junior person.
01:37:15I'll leave it to the adults,
01:37:16let them fix everything,
01:37:18and then when I'm a senior person I'll help.
01:37:21Well, no, no no.
01:37:22That's not how it works.
01:37:24That's not how we advance.
01:37:25Change, at least not my lifetime.
01:37:27So it has to come from everywhere.
01:37:29Which is,
01:37:30you know,
01:37:30the message that ash in June
01:37:32we're sharing with us and and
01:37:34Barbara to thank you,
01:37:35yeah?
01:37:36I would also say I think it it's
01:37:39it's dangerous though to like only
01:37:41rely on the trainees because it it.
01:37:43You know, recognizing that there is just
01:37:46incredible vulnerabilities, you know.
01:37:47So I get emails all the time from Elk
01:37:51plus like. Med students, undergrads,
01:37:53residents fellows saying you know,
01:37:56can I be out like this is a
01:37:58significant portion of my work?
01:37:59I don't know. I was asked.
01:38:01Totally illegal, egregious things on
01:38:04the residency and fellowship trail.
01:38:07Still, I get asked.
01:38:08Terrible and egregious things as an
01:38:11assistant professor like you know.
01:38:13So all that's the say,
01:38:14I totally so much agree and it
01:38:16has to be multidirectional,
01:38:18but I think it's also really
01:38:20important that we protect our
01:38:21trainees and recognize that like.
01:38:23There are certain things that we could
01:38:25do today, you know, stroke of the pen.
01:38:27So how are you asking about gender unlike,
01:38:30you know, intake forms, interview forms.
01:38:33Are we asking people prone?
01:38:34I mean those things like that is that
01:38:37is settled science like we should all
01:38:39be asking that actually like no more
01:38:42is needed from our trainees to say.
01:38:44And sadly I think that the challenges
01:38:46that I see trainees spending so much
01:38:48time and energy just trying to make these
01:38:52spaces safe for themselves and for.
01:38:54Patients and her colleagues that
01:38:56they actually are at a disadvantage.
01:38:58Actually in terms of grants in
01:39:01terms of papers in terms of just
01:39:03studying for whatever tests because
01:39:05they are working so hard.
01:39:07So I would never say don't work on it.
01:39:10But also I'm like we don't need anymore
01:39:12actually research on racial disparities
01:39:14to know that we need to change things.
01:39:17We also actually don't need much more
01:39:20on gender differences to realize
01:39:22like we've just missed the boat.
01:39:24In terms of having a binary notion of gender,
01:39:27and we have a lot of solutions out there
01:39:29that we all just need to enact and.
01:39:32Yeah.
01:39:34And I I didn't mean to suggest
01:39:37totally. No, I just wanted like
01:39:39say that because I am there as
01:39:42a mentor like to people who are.
01:39:44You know, and and myself too.
01:39:46I mean, I was told many times
01:39:48not to do this as my career list.
01:39:52Last night I'd be shunned in the world
01:39:54of medicine, and I couldn't not.
01:39:57But it's been hard, very hard, you know.
01:40:01Frankly, it would have been a
01:40:02lot easier to study like preterm
01:40:04labor or something, you know but
01:40:06well, but that's not what we do,
01:40:07right? We go for this stuff
01:40:09that's important to us,
01:40:10and in that passion we can do better.
01:40:13So thank you for doing that.
01:40:15Thank you for taking on that challenge.
01:40:17Now as a senior person,
01:40:18I will say that I have an obligation.
01:40:20I have a responsibility to help the field
01:40:23and so that means pulling people up.
01:40:26OK, so when it comes time for promotion
01:40:30and need for support and things like that,
01:40:33I want people to come to
01:40:34me and say would you?
01:40:36Would you be able to write a good
01:40:38letter for me and I say yes absolutely,
01:40:40because we need better people.
01:40:42More better people.
01:40:44More thoughtful, different perspectives.
01:40:46All that kind of stuff to populate the
01:40:49field at all levels so you know the idea of,
01:40:52like, you know,
01:40:53knowing who the Champions and advocates
01:40:54are is really critical because
01:40:56you know what the junior people,
01:40:59what the trainees cannot,
01:41:00and maybe should not take on themselves
01:41:03that can be shared with other people
01:41:06who have positional power and tenure.
01:41:09You know to take the hit right totally.
01:41:12You know, so you got it.
01:41:15You got it.
01:41:15I have to learn the system and
01:41:18how to manage it.
01:41:19No, you know when to lean in and when
01:41:22to hold back and let others lean in.
01:41:25So you know the mentorship is important.
01:41:28So oh, and Ashley,
01:41:29that's a great time for me to do
01:41:32a shameless plug for our program.
01:41:34I'm going to put it in the.
01:41:38Oh my gosh, not here it is.
01:41:41Put it in the chat.
01:41:43We have not updated it because we only
01:41:46got our score a couple weeks ago,
01:41:48so we haven't gotten the money yet
01:41:50and so we're we're in the process of
01:41:52about to get organized to get the
01:41:55courses moving, so just you know,
01:41:58go to the website.
01:41:59Keep an eye on, you know,
01:42:00put a tab on it and you know look
01:42:02for our promotional emails when it's
01:42:04time to sign up for the workshop.
01:42:06So and if anybody is, thank you.
01:42:09If anybody is going to the LGBT health
01:42:11workforce conference in New York.
01:42:13At the end of April we'll be
01:42:14there and we'll be celebrating.
01:42:16So come by for a little champagne.
01:42:23One of the things I wanted to do
01:42:25was ask both Ashland and Juno,
01:42:27just what was it that you had to not include
01:42:29in the talk, but that you wanted to,
01:42:32but there wasn't enough time.
01:42:34I think that. That such a rich topic I'm,
01:42:38I'm sure you both had. Other things that.
01:42:43You had to to kind of make room. With.
01:42:54Oh, ask. You go first, please.
01:42:57I wanted to say one other quick thing
01:42:59about this bystander conversation
01:43:00we were having, which I don't know
01:43:02how helpful it'll be or not be.
01:43:04But in my experience, every situation
01:43:07in which I'm witnessing mistreatment
01:43:10of another person is very different,
01:43:13and in each of those situations
01:43:16my own personal safety.
01:43:17You know, either physical safety or safety
01:43:20in terms of my career is very different,
01:43:22and so the tactics that I use in
01:43:25these different situations vary.
01:43:26Greatly like for example,
01:43:29I remember being at a tumor board where.
01:43:33There was, just like very clear,
01:43:34misogyny between attendings that were
01:43:36that were much more senior than I was,
01:43:39and it was from people who were
01:43:42very aggressive in their approach
01:43:44and and were in leadership.
01:43:46So I, I felt in the moment that the best
01:43:48I could do was just like, clear my throat,
01:43:51very loudly, over and over again,
01:43:52like just to kind of say, like,
01:43:54hey, something's going on here.
01:43:56That's not OK.
01:43:56And then to talk about it with the
01:43:59other Chinese and then talk about it
01:44:01with my attendings, but I feel like.
01:44:04Dumb.
01:44:04In my mind,
01:44:05I I try to be very forgiving of myself
01:44:08and to just do the best that I can
01:44:10in any given situation and to try to
01:44:13do whatever seems possible and safe.
01:44:16And then I think that the other issue
01:44:19about training is that we're so busy
01:44:21that there's very little time to
01:44:23process these things that happen.
01:44:25But I think one thing that I find very
01:44:27helpful is having close colleagues
01:44:28that I can call up and and just say like hey,
01:44:31this is what happened today and kind
01:44:33of like talk through, you know,
01:44:35a strategy,
01:44:35a different strategy that I could have
01:44:37used in the moment or a strategy that
01:44:38we could use together now in terms
01:44:40of like what are we going to do about this?
01:44:42Faculty member who continues to make
01:44:44fat phobic comments about his patient
01:44:47in clinic or or whatever it is?
01:44:49Uhm?
01:44:51And so I just I guess I want to also
01:44:53express like a lot of empathy and
01:44:56admiration for all of you for really
01:44:58trying to do this very difficult work.
01:45:01OK, so then,
01:45:02in terms of the top I I don't want.
01:45:07I guess there's two
01:45:08things that come to mind.
01:45:09One is that I work with a Community
01:45:10Advisory Board of transgender people
01:45:12who've been diagnosed with cancer,
01:45:13and we've been working together
01:45:15probably for over three years.
01:45:17Some of us and.
01:45:20Last night we were talking about
01:45:22actually Juno and I are working on a
01:45:25chapter for the ASCO book together.
01:45:26And so I brought it to them and we
01:45:29had a conversation about it and dumb.
01:45:31It was a very difficult conversation about
01:45:34how we're talking about data collection,
01:45:35in particular whether we're asking
01:45:37about sex assigned at birth or not.
01:45:39And inadvertently,
01:45:40I like I kind of like pushed,
01:45:45pushed through instead of like really
01:45:47listening and it ended up being.
01:45:50I think that one of the Community Advisory
01:45:52Board members felt very they kind of
01:45:54bulldozed over and not listened to.
01:45:56And so I guess I'm bringing this up
01:45:59because I I think that our work with
01:46:02community members is so important and
01:46:04and necessary for doing research and
01:46:07also so so difficult in so many ways.
01:46:09And I think,
01:46:10especially with the time constraints of like.
01:46:13Deadlines Grant deadlines,
01:46:15publication deadlines that it
01:46:16can be really hard to like.
01:46:18Slow down and try to be a good
01:46:21listener and collaborator,
01:46:23but I think that the work with that
01:46:25Community Advisory Board has been like
01:46:27probably some of the most influential
01:46:29of like my career as an oncologist,
01:46:32I mean.
01:46:32Such that it is so.
01:46:35I wish that I had had more time to talk
01:46:37about those relationships in that that work.
01:46:44Thanks. And then I. I mean,
01:46:47I think I always like to give people sort
01:46:50of very practical things so you know,
01:46:53usually it's obviously like many talks,
01:46:56kind of in some ways condensed
01:46:58into one to give ideas.
01:47:00But there's for the folks who
01:47:03are really research minded.
01:47:05I really, you know.
01:47:06And or doing research like to
01:47:07think about things like you know,
01:47:09example table,
01:47:10ones of like if you're studying
01:47:13uterine cancer like these are
01:47:15the various groups you should.
01:47:16Think about it and I have to
01:47:18like mock table ones and those
01:47:19kinds of things that I think is
01:47:20just very illustrative to see,
01:47:22like most people aren't doing that,
01:47:24but should be right.
01:47:25So it would be, you know,
01:47:27cisgender women, transgender men,
01:47:29nonbinary people,
01:47:30and looking across those different
01:47:32groups to really make visible
01:47:34differences and experience,
01:47:35and then for the clinician colleagues,
01:47:38really, you know,
01:47:39how do you ask about pronouns?
01:47:42I mean,
01:47:43how do you document them in your chart?
01:47:46How?
01:47:47Are you asking about sexual activity
01:47:50and or who's who's supporting you?
01:47:53Or you know, going through cancer, right?
01:47:57Like these kinds of things so that
01:48:00it's it's just very real and granular,
01:48:02and so there's that's kind of the whole.
01:48:04Next, you know,
01:48:06201's of like these kinds of talks but but.
01:48:09You know the the hope is at least you
01:48:11know planting seeds like I didn't we didn't.
01:48:14None of us learned how to do
01:48:16a history on our patients.
01:48:17You know, in one talk or you know,
01:48:19learn about.
01:48:21Cisgender women all-in-one talk right
01:48:23so like same same type of thing so,
01:48:26but there's obviously a lot
01:48:27more in terms of really taking
01:48:29care of transition gender,
01:48:31diverse people,
01:48:32and actually all people in a in
01:48:34a more accurate way.
01:48:39Thank you. So I just
01:48:44can't help noticing that.
01:48:48You know, I, I could see the four trainees,
01:48:51bannik Julia and David and.
01:48:55Are you guys OK 'cause you're
01:48:57not smiling and I just worry because this.
01:49:01You know I am new to this area of work.
01:49:04I've only been doing this work for maybe
01:49:06about 5 something years and it's tough.
01:49:09And I just wanted to check in
01:49:11with you or you OK.
01:49:14You look pensive.
01:49:18There's a lot to think about, right?
01:49:19Like part I guess.
01:49:20Part of it is thinking about like the
01:49:23the the the multitudes of scales right?
01:49:25Because a lot of this even assumes
01:49:26that trans folk are getting into the
01:49:29hospital doors at the first instance.
01:49:32And like what sort of skews and and even from
01:49:35like a research sort of stats perspective,
01:49:38like had you account for
01:49:40like what is already,
01:49:41it can be like a a smaller subset,
01:49:44like how do you get the most power
01:49:47to answer and most serve people?
01:49:50When they're just kind of disserved
01:49:52very broadly.
01:49:53And how?
01:49:55When you have like that intersections
01:49:58of identity that even further fragment
01:50:00your your ability to resolve.
01:50:02Thanks for a very data driven standpoint,
01:50:05which I think.
01:50:07You know institutions of power rely
01:50:09on as like admissions of evidence,
01:50:11whereas like things like ethnographies
01:50:13are a little less admitted
01:50:15as evidence in these spaces.
01:50:22Yeah. Very very tough. As
01:50:27a cancer epidemiologist,
01:50:28I think about the numbers all the time.
01:50:31I think about the data all the time.
01:50:34Some of the work that I'm doing is about,
01:50:37you know. How do we get more?
01:50:38You know, sexual orientation,
01:50:40gender identity,
01:50:41data into our electronic health records?
01:50:43How do I get I?
01:50:44I'm at MD Anderson.
01:50:45How do I make it happen here?
01:50:47And fortunately,
01:50:48you know when I have messaged upstairs
01:50:51to leadership they have been positive
01:50:54and responsive but it's still slow.
01:50:57Slower than is desirable,
01:50:59so fortunately you know the time
01:51:01is now and we are moving towards
01:51:03gathering people and beginning to think
01:51:05about how we're going to exert some
01:51:07pressure to really move things forward.
01:51:09And you know, Barbara and I.
01:51:11We were just on a meeting last week together.
01:51:13'cause I sit on the external
01:51:15Advisory Board for the Yale Cancer
01:51:18Center and these issues come up.
01:51:21It's actually in the announcement for
01:51:23Cancer Center support grants now,
01:51:25and you know, we have to.
01:51:28We have to address these issues and we
01:51:30are we have been slow but it has to happen.
01:51:33And you're right,
01:51:35the multitude of.
01:51:36Issues and complexities.
01:51:38And you know,
01:51:39just doing it is not just doing,
01:51:41it's doing it.
01:51:43Doing it appropriately and with
01:51:44consideration and respect and inclusion.
01:51:46And you know multiple perspectives
01:51:49and involvement, so it's hard.
01:51:54But I I think you know the time is
01:51:56really good because there are a lot
01:51:58of really good people who are in it
01:52:00now and want to make it work well.
01:52:04And the other thing I would say is that the.
01:52:08Generation that is,
01:52:10I mean our trainees generation.
01:52:13Is. So much more committed to
01:52:18like a good world, right?
01:52:20I mean you see it in you see it in climate.
01:52:22You see it in in their response
01:52:24to Black Lives Matter.
01:52:25But also I think. When it comes
01:52:30to gender and sexual minorities,
01:52:31much more accepting of each other,
01:52:33much more accepting of themselves than
01:52:35certainly, you know, my generation was.
01:52:37So I I actually.
01:52:39Although it is painful work and
01:52:42and these conversations. Uhm?
01:52:45You know, you remember a lot
01:52:47of things that weren't great.
01:52:49I'm actually more full of hope
01:52:51than I have ever been because I see
01:52:54a new generation coming that's.
01:52:56Not accepting, you know,
01:52:58not putting up with as much,
01:52:59I would say.
01:53:02I think
01:53:02Ben was gonna say something
01:53:03if I missed. Touch.
01:53:07Well, actually, maybe I'll just
01:53:09doctor Albert if you don't mind me,
01:53:11I'll just bring the conversation
01:53:13to the public form. So I was going
01:53:15to ask if
01:53:17Doctor Alper and doctor within Melbourne.
01:53:19If you could expand upon a
01:53:21little bit more about.
01:53:23What's known about sexual and
01:53:25gender minority providers?
01:53:28The experiences of the providers and what?
01:53:30What are other interventions that we can
01:53:32do to make sure that we create an open?
01:53:36In open kind of workplace environments,
01:53:39because I think a lot of the things
01:53:40that we've been talking about so far has
01:53:42been very patient centric and also how?
01:53:46How we can go about delivering
01:53:48better care? But how about I?
01:53:50I think that among colleagues in
01:53:52the interactions that we have.
01:53:55Is kind of like a unique experience
01:53:57as well, slightly different.
01:54:05The Ben and I were talking a little bit
01:54:07in the chat about a paper that a friend
01:54:09of mine published basically doing it.
01:54:11He did a survey of trans and gender.
01:54:15Diverse clinicians and just found
01:54:17that people face face significant
01:54:19barriers during training,
01:54:20including having to hide their identities
01:54:24and witnessing statement discrimination.
01:54:27And I was also saying that you know,
01:54:28I think that I've been talking with
01:54:30various colleagues about building better
01:54:32networks of SGM clinicians across the US
01:54:35that we can better support each other.
01:54:38Probably not as much as Doctor
01:54:40Obannon Malaver,
01:54:40but I have talked to many people
01:54:42who are facing like a lot of really
01:54:45challenging decisions about whether
01:54:46to be out in their personal statements
01:54:48or on the interview trail and how
01:54:51to manage those things so I don't
01:54:53have like more data to quote you,
01:54:56but I do think.
01:54:57But trying to figure out how to better
01:54:58support each other with these things
01:55:00would be would be really helpful.
01:55:04Yeah, I, I think you know it's it's.
01:55:10It would be easy to say like do
01:55:12it be out in whatever and that's
01:55:14actually not the real sadly people are
01:55:17facing it's it's a hard situation.
01:55:19People do face discrimination,
01:55:21people are fired, people are,
01:55:23you know, lots of.
01:55:25The term microaggressions get used.
01:55:26I think there's nothing micro about my God.
01:55:29Persistent microaggressions, right?
01:55:30But you know, even minor things like you
01:55:34know department picnics where like you know,
01:55:37do you know if someone has kid
01:55:39like do they bring their partner?
01:55:40Do they not?
01:55:41Do they bring their you know
01:55:43kids or you know queer or trans?
01:55:45Or you know like all of these things and
01:55:48yet face face that parental leave you
01:55:50know all of all these things that are not,
01:55:53you know, assumptions.
01:55:53I I get asked about my husband all the time.
01:55:56You know, like those kinds of things,
01:55:58even in San Francisco, even you know.
01:56:01So all that's to say,
01:56:03I think there's there's a lot of work to do,
01:56:05and then we all of us need to be, you know,
01:56:08thinking about our language and our policies.
01:56:10We also the usual things when we're thinking
01:56:12about diversity of colleagues, right?
01:56:15So, recruitment,
01:56:17retention, satisfaction,
01:56:19quality of life,
01:56:20equity in terms of pay retention packages,
01:56:23startup packages?
01:56:26Space you know does the does the the
01:56:29trans researcher get the like Little
01:56:32corner office with no window and
01:56:34whatever like versus you know the and?
01:56:37And if that if we're thinking about
01:56:40colleagues you know, I will say that.
01:56:44You know,
01:56:44we know that there's a minority tax in,
01:56:47especially in academic institutions,
01:56:49that faculty and providers of color,
01:56:53women, LGBTQ, plus folks,
01:56:56transgender diverse folks spent
01:56:58a lot of time.
01:56:59You know,
01:57:00everybody wants folks on their committees.
01:57:02Everybody wants folks to mentor folks,
01:57:04you know.
01:57:05So and then, that limits productivity.
01:57:07It limits, certainly quality of life.
01:57:10Sleep.
01:57:11All these other, you know, Wellness things.
01:57:12So we had to really be thinking.
01:57:14I think carefully about this and and
01:57:16thinking about things like you know
01:57:18how much support people are getting.
01:57:21I'm very much for, for example,
01:57:23making visible all of that work right?
01:57:25So you know an academic Medical Center,
01:57:30for example, with it's, you know,
01:57:32pillars of education, training, research,
01:57:38and there's the service component.
01:57:40I think all of those should be visible
01:57:42in terms of percent time allocations.
01:57:44And and part of promotions and whatnot,
01:57:49and should be effectively monetized
01:57:50and considered as part of people's
01:57:53time and percent packages, right?
01:57:55So the fact that I'm on every search
01:57:57committee for new faculty because people
01:57:59want an LGBT perspective, which is beautiful.
01:58:02But it's also.
01:58:03Therefore I don't get to write the
01:58:06papers and grants as much as my.
01:58:08White cisgender male colleagues
01:58:09who are not being asked to be
01:58:11on every single 'cause.
01:58:13There's so many more of them and you know,
01:58:15so these are the kinds
01:58:17of things that we really
01:58:18need to be asking ourselves,
01:58:19those institutions and how our
01:58:21systems are inculcating difference
01:58:23and disparities within them.
01:58:30This has just been a fabulous
01:58:32session on top of your wonderful
01:58:34talk and I think really a very
01:58:37meaningful thing for us here at Yale,
01:58:40where I think we don't talk enough
01:58:43about about these topics and I
01:58:45hope we have a chance to engage
01:58:48again in the future and wish you
01:58:51both well with your with your
01:58:53really important work and thank you
01:58:55again for making time for us.
01:58:57Yes, thank
01:58:58you so much and.
01:58:59And just to say, please any of you,
01:59:01individually you know,
01:59:03feel free to reach out.
01:59:05Our emails are on our slides.
01:59:06We'll make sure that.
01:59:09That Renee has our slides and
01:59:11and they are accessible to you.
01:59:12Please feel free to tweet just
01:59:15speaking to Doctor Lu's comment
01:59:17a question about tweeting.
01:59:19Thank you very much, of course,
01:59:22and happy of course to come back
01:59:24or talk further in other settings.
01:59:26I will just say we are setting up a
01:59:29mentorship network for SGM researchers ASH.
01:59:31I don't even think you know about that.
01:59:34Yeah, it's it's gonna be so.
01:59:36We're working on that through
01:59:38PRIDE study and Pride net.
01:59:40We're also gonna be setting
01:59:41up a researcher boot camp for
01:59:43folks who are interested in SGM
01:59:45research to really train on.
01:59:47Sort of these things,
01:59:48like how do you handle multiple
01:59:50gender identities in your metrics
01:59:52in these kinds of things for
01:59:54community based researchers as
01:59:56well as academic researchers as
01:59:58well as internship programs and
01:59:59postdoctoral programs so we have summer
02:00:02undergraduate internship programs.
02:00:03We have postdocs.
02:00:04We now are gonna have three
02:00:05with the bright city,
02:00:06so there's some various
02:00:08developments to actually train.
02:00:10Built the next generation of STM
02:00:12researchers so please stay in touch.
02:00:15So much care.
02:00:17Bye bye.