MetroHealth

The following report is proprietary information and constitutes trade secrets of The MetroHealth System and may not be disclosed in whole or part to any external parties without the express consent of The MetroHealth System. This document is intended to be used internally for The MetroHealth System discussion.

Engaging the Patient, Family and Community to Improve Care for Transgender Pediatric Patients

The MetroHealth System

Jennifer Lastic, CPXP, Manager, Patient-Centered Care

Shannon Scott-Miller, Patient and Family Advisor

Beth Clegg, Senior Market Research Associate

Margarita Diaz, MSN, RN Manager Health Equity

Today’s Presenters

Description Outline:This session will provide our collective work as a case study and roadmap for how one essential healthcare system (The MetroHealth System) focused on building relationships and partnerships in order to improve care for pediatric patients who are transgender and/or questioning, and their families; with an emphasis on creating a respectful, welcoming and affirming approach and how every voice matters in the delivery of exceptional and equitable care.

Learning Objectives:1. Discuss the purpose and goals of the Transgender Youth Care Committee

2. Learn about the process implemented to identify gaps and opportunities to strengthen services

3. Share information and resources with participants to help inform their services to this patient population

Background

• Who we are

• Activity

• Grounding in terminology

• PFA story sharing

• Patient and community insight

• MetroHealth cultural competence journey

Agenda

The MetroHealth System

• Founded in 1837, Cleveland’s oldest hospital system

• Cuyahoga County’s public health system

• Academic medical center affiliated with Case Western Reserve University School of Medicine

• Known for Level 1 Adult Trauma Center, Metro Life Flight, and one of two adult and pediatric burn centers in the state of Ohio

• 70 locations including: 4 hospitals, 4 emergency departments, more than 20 health centers and 40 additional sites

• 7,800 employees

• System-wide transformation including building new hospital on main campus and planning revitalization of surrounding neighborhood

Core Concepts of Patient- and Family-Centered Care

MetroHealth Patient and Family Advisor (PFA) Program

Dignity and Respect

Information Sharing Participation Collaboration

PFAs Integrated into the system – Committees, projects, speaking engagements

• More than 50 active volunteer PFAs

• Collectively, PFAs log over 400 volunteer hours annually

MetroHealth Patient and Family Advisor (PFA) Program

“Snapshot” of PFA Engagement

MetroHealth Patient and Family Advisor (PFA) Program

• Patient and Family Advisory Council (PFAC)• Leader’s Boards

• Patient Experience• Quality• Inclusion and Diversity• Federally Qualified Health Centers

• TeamSTEPPS Action Councils• Arts in Medicine Advisory Council• Ethics Committee• Campus Transformation• Story-Sharing• Transgender Youth Care Initiative

*Activity*

Tell your partner something that they wouldn’t know about you by looking at you.

Grounding in terminology

“We must be embracing to all, treat all, employ all, and see value in all.”

Akram Boutros, MD, FACHE

President and Chief Executive Officer

The T in LGBT: Understanding terminology

Transgender – Is a person who no longer identifies with the sex, which was assigned to them at birth.

Alternate Terminology• Transgender women, TransWoman

(Male To Female/MTF)• Transgender men, TransMan (Female

To Male/FTM)

Transsexual: Traditionally a term used to describe transgender individuals who have undergone some form of gender confirming surgery and hormone treatment.

Cisgender: An individual who has a biological sex that aligns with their felt and/or experienced gender.Or, someone who doesn’t identify as

transgender.

Gender Identity and Sexual Orientation are not one in the same. All people have a sexual orientation and gender identity.

The importance of knowing the difference: Terminology of LGBTQ health

Shannon’s Story

Transgender Youth Care Committee

PurposeImprove care experiences with our transgender youth and families

ObjectivesEngage transgender patients and families for current experiences and solution generationConsider staff education and training, communication materials and resources

Transgender Youth Care Committee

Key stakeholder collaboration• Patient and Family Advisors• Inclusion and Diversity• Kidz Pride (LISW and Providers)• Pride Clinic (Providers and Staff)• Operational Staff• Marketing• Nursing• Medical Staff• Quality• Pediatric Psychology• Patient Experience• Market Intelligence• Primary Care• Gay-Straight Alliance • PFLAG

Patient and Community Insight

Methodology

31 transgender youth and families

9 community partners/agencies

Adult LGBT individuals

2018

2018

2016

Qualitative conversations with…

Caveat – parents and youth that we spoke with, had at least one supportive parent and did not include minority populations

Primary desires are not unique to transgender patients

“I want them to treat my child with the same respect they would give me as an adult. She knows what is

wrong with her better than I do. Regardless of transgender or not –

treat them as a person “

“I want to understand what the doctor is doing throughout the course of visit and reasons behind

a change. I want to know why we are

making a change or doing lab work, etc.“

Listen to MERespect me

and my familyJust a kid

“She doesn’t want it to be her only existence.

She also plays in the band and is funny.”

Training and education MUST start with basics of Welcome. Listen. Care

Bad customer service can be considered discriminatory

Acceptance is expected from health care in a world where patients hope for tolerance

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Tolerance

AcceptanceFrom healthcare…

From everywhere else…

Patient and family desire…

“If you are in a gender clinic or pride clinic, you should be there because you want them to seek peace. You see them struggle in every place in life and you want to help with that struggle.”

“My daughter rates her providers. We talk about whether we would see that person again, and we have a list.

She’s started hiding her symptoms from me because of so many bad experiences – she wants to avoid it at all.”

Preferred pronoun is vital – it’s not JUST a name

ElizabethBeth

“An ideal appt is when the doctor and the staff use the correct name and pronouns especially when they are not the legal names and pronouns. I know there are ways to code the patient info in their system for the preferred name. I know they can do that.”

Patients attuned being called the wrong name to a trigger and parents shared that some experiences could cause days of turmoil.

Education around seriousness of impact is critical throughout the System.

“When clinicians keep misgendering me, that’s when I know they really don’t care”

“When mistakes happen (and they will). Admit it. Apologize and move on.”

Following the lead of the child, but supporting each other together moving forward

Journey is walking together, learning together

Providers talked about kids exploring their gender identity that did NOT have support are STILL searching for their team to work together on their journey.

“Not to tell us when to change pronouns but discuss the ins and outs of when to change pronouns”

Tran

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Clin

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Pare

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This also includes a support network which could include: school, friends, family/siblings, etc.

Parent: “I feel like if I asked questions, it seems as-if I’m not 100% on board and the clinicians look down on me.I’m supportive, but I want to know this is safe and that she is on board.”

Unfortunately, many times the messages are inconsistent – through online or schools – and some times even dangerous. [ex: obtaining hormones online/mail order]

Top surgery

Bottom surgery

Support groups

Advocacy

Legal paperwork

Adult care?

Binding?You are

here!

Desires

Core needs…1. Primary care2. Therapy (child and family)3. Hormone treatment4. Name/pronoun5. Navigation

“Every time we leave the endocrinologist, he leaves in tears – he wants blockers. He wants to move on. He feels like he is ready and they are holding them back.”

Desire for personalized journey

“Not every transkid is the same…” Meet ME where I am

“I would love a step by step. What do you do first and what do you do second.”

Clear expectationsWhat are the next steps?

However, current reputation is not enough to counter lack of convenience

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Desperation

Beginning phase…

Frustration

Maintenance phase…

Stabilization

Parent will do anything to get an appointment with the expert that has been recommended. Feeling in “crisis” mode.

• Calling multiple times• Sometimes driving hours • Waiting months

Parents become more educated and comfortable with concept

• Experiencing less crisis moments

• Regularly scheduled appointments

• Clinical plan stabilized

Convenience factors become more important

• Length of drive• Cost of visits• Parking• Missing school• Lack of phone access• Minimal appointment

availability• Focus on future

1 2 3

• For parents of younger patients–how do I set us up right?

• For parents of teens– how do I catch up to my child?

Findings and considerations - Vital

Key priorities for our transgender patients and families

• Pronoun consistency

• Consistent respectful interactions

• Acceptance

• Resource

• Desire for inclusive care plan

MetroHealth Cultural Competence Journey

Why Cultural Competence in Health Care?Primary concerns:

§ End misunderstandings in diagnosis or in treatment planning that may arise from differences in culture

§ Improve patient adherences with treatments

§ End health care disparities

Cultural Competence is the ongoing capacity of healthcare systems, organizations and professionals to provide for diverse patient populations and high quality care that is safe, patient and family-centered, evidence-based and equitable. (The National QualityForum)

What is Cultural Competence?

Consider the Following:

• If I pick up a magazine, watch TV, or play music, I can be certain my sexual orientation will be represented.

• I do not have to fear revealing my sexual orientation or gender identity or expression to friends, family, or coworkers. It's assumed.

• I can choose to not think politically about my sexual orientation.

• I am not accused of being abused, warped or psychologically confused because of my sexual orientation, gender identity or expression.

Inclusion, Diversity, Cultural Competence and Equity Foundations

• Health disparities adversely affect groups of people who have systematically experienced

greater obstacles to health, based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other

characteristics historically linked to discrimination or exclusion.” Healthy People

20/20

• Many LGBT people feel unwelcome in health care settings and avoid care in order to avoid uncomfortable or stigmatizing experiences.

Makadon, HJ, Mayer, KH, Potter, J,

Goldhammer, H, 2015

Healthcare disparities based on gender and sexual orientation

• Pride Network

• KidzPride Clinic

• LGBTQ Health and Safe Zone Training and Education for staff

• GSA or Gay Straight Alliance Employee Resource Group

• 5th Annual Transgender Job Fair

• Provider Education – Trans Youth Video

• SOGI Upgrade in EPIC

• LGBTQ Advocate Program

• VNA Cultural Competence and Transgender Care

MetroHealth has been and continues to be an inclusive organization

Established programs Developing programs

A patient will present and they will want to go by a name other than their legal name. When this is the case, you can use the Preferred Name field to document this. This way front end staff as well as clinical staff will know what the patient prefers to go by. This tip sheet covers the steps to take to document the patient’s Preferred Name as well as where this information can be viewed within Epic.

“Preferred Name” upon Epic registration

Lead by example:

• “Hi my name is ______ and my pronouns are _____”

• Provide nametags (Pride Network)

• Communication board in patient room

• Note in the patient chart

• Report out to your teams/physicians

• Practice asking pronouns:

• “Hi, what’s your name and your pronouns?”

When/How to use gender pronouns

Cultural awareness

Cultural awareness

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“I think MetroHealth should continue "not

noticing" the differences in people, while

acknowledging that there are differences that

exist”- MetroHealth Focus Group Participant

This is a journey not a destination

Questions?

Jennifer Lastic, CPXP, Manager, Patient-Centered Care jlastic@metrohealth.org

Shannon Scott-Miller, Patient and Family Advisorjlastic@metrohealth.org

Beth Clegg, Senior Market Research Associate eclegg@metrohealth.org

Margarita Diaz, MSN, RN Manager Health Equity mdiaz1@metrohealth.org