TRANS-ARC Virtual Summit Eugene Washington PCORI Engagement Award Lay Conference Summary

Background • Organization: Transgender & Non-Binary Surgery Allied Research Collective (TRANS-ARC)

o TRANS-ARC is led by a group of advocates, transgender and non-binary (TGNB) community members, researchers, and clinicians from around the country who are dedicated to improving surgical care and outcomes for the TGNB community. TRANS-ARC is gathering a community of people who are passionate about centering TGNB community and patient perspectives in research on genital gender affirming surgery (GGAS), also called bottom or lower surgery.

• Name of Conference: TRANS-ARC Virtual Summit Conference Date and Location: March 12th & 13th, 2021; Online

• Conference Theme and Objectives: Development of TGNB community-centered comparative effectiveness research questions about GGAS.

Conference Summary The TRANS-ARC Summit was originally planned to be an in-person event, in Portland, OR. However, due to the ongoing COVID-19 pandemic, the Summit took place via Zoom. To maximize engagement, we switched between didactic and interactive sessions, scheduled frequent breaks, and began Day 2 with breathing and centering exercises together. The Summit featured presentations from community members, clinicians, and researchers about surgery and transgender health research, and small group discussions. Trans community members and patients were involved in every step of the planning process and had final decision-making power for all major event decisions. The Project Lead, Dr. Geolani Dy, assigned breakout/small groups, based on stakeholder role and participant demographics. Small groups had 7-8 community members, one facilitator and one “research resource”; a person with significant comparative effectiveness or health services research experience that was on hand to answer methods questions and provided support with creating research questions using the PICOTS1 framework on virtual whiteboards. Our facilitator team was majority transgender or non-binary identifying people. The small group assignments were the same on both days. Each community member had the choice of being in a group with only other trans stakeholders, and indicated which surgery type they would prefer to discuss on their RSVP form. On Day 1, we started by setting the stage for small group discussions. The first breakout room activity was to establish group norms and discussion of how to make this online space as safe as possible. This laid the foundation for a shift to focusing on equity in transgender health research, followed by a small group discussion on power dynamics within each small breakout room team. The afternoon of Day 1 focused on providing an overview of research strategies, comparative effectiveness research (CER), and the PICOTS framework. The didactic research sessions were immediately put into practice during the breakout session, when groups started drafting a CER question

1 Patient, Intervention, Comparator, Outcome, Timing, Setting

related to their assigned topics. These priority topics were selected based on a series of surveys prior to the Summit. Day 1 concluded with a panel presentation (trans community advocates/patients and a clinician-researcher) and large interactive group discussion on strategies for engaging trans people in research. After opening Day 2 with a group breathing and centering exercise, we heard from a patient-researcher and a clinician about clinical outcomes in genital surgery, and from researchers on patient-reported outcome measures for gender-affirming surgery that are in development. The afternoon breakouts were focused on refining question 1 from Day 1 and developing question 2. The final session was a pre-recorded panel of patients, community members, researchers, and clinicians, talking about strategies for sharing results of the Summit and future trans health research.

Key Findings The TRANS-ARC Steering Committee is currently working to refine the research questions developed at the conference, as well as findings related to engagement and dissemination strategies.

From the post-Summit survey, we found that: - 98% of attendees would likely attend another TRANS-ARC event - 97% of attendees are interested in collaborating with TRANS-ARC on future projects (including

sharing Summit results) - Attendees found meaning in learning from each other, networking in their small groups, and the

diversity of the attendees - Common challenges reported by attendees include: Zoom fatigue and inability to ask questions

after pre-recorded talks Lessons learned

- Add closed captioning services. We aimed to offer closed captioning through the Zoom virtual platform, but this was only accessible during live large group sessions for people with the most recent version of Zoom, so small group discussion and pre-recorded presentations lacked closed captioning. In future events, closed captioning should be offered for all content.

- It is challenging to craft presentations that will resonate with everyone in a diverse, community-based audience. Although we sent an audience description to all speakers ahead of time, some attendees said that the talks were too academic. Some attendees also reported that the talks were too introductory. Perhaps some of the discrepancy can be mitigated by asking for familiarity with and experience in research during the RSVP process, so that talks can be tailored for most respondents.

Dissemination Plans Selected pre-recorded talks and presentation materials will be archived on the TRANS-ARC site, in order to be freely available to community members and researchers. Attendees will be notified when the materials are posted, and asked to share within their networks. The results of our Summit discussion on

“The Summit in itself was very meaningful for me. It was amazing to meet people in positions of power engaged & involved in wanting to create change and center trans/gender-diverse patients' experiences in the health care we receive.”

dissemination strategies will be used to create a dissemination plan for our Prioritized Research List and Strategic Plan for patient-centered research in genital surgery.

Appendices 1. Conference Agenda 2. Attendee Information 3. Post-Summit Survey Questions 4. Breakout rooms and roles information 5. PICOTS worksheet

Transgender and Non-Binary Surgery – Allied Research Collective Summit

Friday, March 12 – Saturday, March 13, 2021

9:00 am - 3:00 pm PST / 12:00 – 6:00 pm EST

Day 1: March 12, 2021

9:00 AM – 9:30 AM Introductions and Overview of Objectives

Priority Topics from TRANS-ARC Survey

Speakers: Geolani Dy, MD, OHSU Transgender Health Program (THP) (Project Lead)

Amy Penkin, MSW, LCSW, OHSU THP (Co-Lead)

Jae Downing, PhD, OHSU-Portland State University (Co-Lead)

9:30 a.m. - 9:40 a.m. PCORI Community Engagement to Comparative Effectiveness Research: Lessons Learned

Speaker: John Gore, MD, MS; University of Washington

9:40 a.m. – 10:20 a.m. Establishing Group Norms and Creating a Safe Space

Speaker: Sachiko Ragosta, Ibis Reproductive Health

Small Group Discussion Sections

10:20 a.m. – 10:50

a.m.

Intersectionality in Transgender Health Research

Speaker: Tonia Poteat, PhD, PA-C, MPH, UNC

10:50 a.m. – 11:00

a.m.

Break

11:00 a.m. – 11:35

a.m.

Team Dynamics and Power

Speaker: Amy Penkin Presentation

Small Group Discussion Sections

11:35 a.m. – 11:45

a.m.

Break

11:45 a.m. – 12:25

p.m.

Strategies in Gender-Affirming Surgery Research

Speaker: Jae Downing, PhD, Pitfalls and Ethical Considerations in Transgender Health Research

Speaker: Jae Sevelius, PhD, UCSF, Community-Based Participatory Research

Speaker: Mahri Bahati, MPH, PRIDE Study, Survey-Based Research

Speaker: Maddie Deutsch, MD, MPH, UCSF & USPATH, Electronic Health Records

12:25 p.m. – 12:55

p.m.

Break

12:55 p.m. – 1:55 p.m. Introducing Comparative Effectiveness Research & PICOTS Framework

Speaker: Geolani Dy Presentation

Small Groups: Create Question #1 (Draft)

1:55 p.m. – 2:55 p.m. Strategies for Engagement in Research

Speaker: Cris Avery, Cris Avery Consulting

Naiymah Sanchez, ACLU Pennsylvania

Geolani Dy Presentation

Small Groups

2:55 p.m. – 3:00 p.m. Closing Remarks & Introduction to Special Interest Groups

Speaker: Amy Penkin

3:00 p.m. – 4:00 p.m. Special Interest Groups / Networking Time (optional)

Group 1: Community building for people interested in meta / phallo

Group 2: Community building for people interested in vaginoplasty / vulvoplasty

Group 3: Career pathways in transgender health: Research, Healthcare

Day 2: March 13, 2021

9:00 a.m. – 9:15 a.m. Introductions to Day 2

Speaker: Amy Penkin

9:15 a.m. – 9:30 a.m. Centering Exercise (Guided breathing and movement)

Leader: Hilda Guiao

9:30 a.m. – 9:50 a.m. What is Known and Unknown in Genital Gender-Affirming Surgery Research

Metoidioplasty and Phalloplasty

Speaker: Gaines Blasdel

Vaginoplasty and Vulvoplasty

Speaker: Geolani Dy

9:50 a.m. – 10:00 a.m. Break

10:00 a.m. – 10:20 a.m. Patient-Reported Outcomes and GENDER-Q

Speakers: Manraj Kaur, PhD, Harvard Medical School

Anne Klassen, DPhil, McMaster University

10:20 a.m. – 10:50 a.m. Break

10:50 a.m. – 11:50 a.m. Reframing CER Question 1

Small Groups

Report Back

11:50 a.m. – 12:00 p.m. Break

12:00 p.m. – 1:00 p.m. Develop CER Question 2

Small Groups

Report Back

1:00 p.m. – 1:30 p.m. Break

1:30 p.m. – 2:50 p.m. Dissemination of Research Findings: Research to Practice, Policy and Community

Moderator: Jae Downing, PhD

Panelists: Jody Herman, PhD, Williams Institute & UCLA

Gaines Blasdel, Healthy Trans & NYU Langone

Maddie Deutsch, MD, MPH, UCSF & USPATH

Luz-Fernanda Venegas, UCSF Small Groups

Report Back

2:50 p.m. – 3:00 p.m. Future Directions: Closing Remarks and Adjourn

3:00 p.m. End

Appendix 2: Attendee Information

3/25/2021 TRANS-ARC Post-Summit Survey

https://redcap.iths.org/surveys/?s=KAXR3P9ME7 1/2

TRANS-ARC Post-Summit Survey

Please complete the survey below. This survey will be linked to your email. If you would like to providecomments anonymously, please use this link instead: tinyurl.com/transarcfeedback

Thank you!

What part(s) of the TRANS-ARC Summit did you �ndmost meaningful?

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What part(s) of the TRANS-ARC Summit did you �ndmost challenging or least meaningful?

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Would you attend another TRANS-ARC event in thefuture?

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Are you interested in being contacted for futureTRANS-ARC projects/collaboration? If so, what wouldyou be most interested in?

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Yes

No

Maybe

Disseminating TRANS-ARC Summitresearch questions and Strategic

plan

Learning about how research works

Adding more people to the researchteam

Developing a research grantproposal

Designing a research study

Recruiting research participantsfrom my community

Data analysis

Reviewing and interpreting results

Sharing study �ndings

Other - please describe:

None of the above

3/25/2021 TRANS-ARC Post-Summit Survey

https://redcap.iths.org/surveys/?s=KAXR3P9ME7 2/2

What do you hope TRANS-ARC can achieve throughour future engagement activities and research?

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Would you like to opt-in to providing your contact info to

other TRANS-ARC Summit attendees?

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Anything you'd like to share that wasn't covered?

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Yes

No

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Appendix 3 – Breakout room and role information

Breakout Room

Trans only members?

Procedure Type Topic 1 Topic 2

1 No Metoidioplasty / Phalloplasty

Sexual health and function

Appearance satisfaction

2 No Metoidioplasty / Phalloplasty

Genital sensation Mental health and quality of life

3 Yes Vaginoplasty / Vulvoplasty

Sexual health and function

Care coordination and provider follow-up

4 No Vaginoplasty / Vulvoplasty

Mental health and quality of life

Goal setting and priorities for surgery

5 Yes Metoidioplasty / Phalloplasty

Out of pocket costs Quality of surgeon and transphobia of providers

6 Yes Vaginoplasty / Vulvoplasty

Quality of surgeon and transphobia of providers

Out of pocket costs

7 No Vaginoplasty / Vulvoplasty

Urinary function Appearance satisfaction

8 No Metoidioplasty / Phalloplasty

Care coordination and provider follow-up

Urinary function

All groups had 7-8 participants, one facilitator, and one research resource.

Role Responsibilities Participant • Engage in conversations around developing research

questions • Contribute expertise on lived experience

Facilitator • Guide the discussion around question development • Ensure all participants have opportunity to engage equally

and meaningfully Research resource

• Take notes on research question development • Contribute expertise on research methods when asked

  

Creating Research Questions using PICOTS  

Population Intervention 

Comparators Outcome 

(Time Frame) (Setting) 

 

 Adapted from the PICOT Questions Template; Ellen Fineout-Overholt, 2006. This form may be used for educational & research purposes without permission.  

INTERVENTION  

In _______________(P), how does _______________(I) compared to _______________(C) affect 

_______________(O) within _______________(T) in _______________ (S)?  

THERAPY  

In _______________(P), what is the effect of _______________(I) compared to 

_______________(C) on _______________(O) within _______________(T)? 

PROGNOSIS/PREDICTION  In _______________(P), how does _______________(I) compared to _______________(C) 

influence _______________(O) over _______________(T)? 

DIAGNOSIS OR DIAGNOSTIC TEST  

In _______________(P) are/is _______________(I) compared with _______________(C) more 

accurate in diagnosing _______________(O)? 

ETIOLOGY (CAUSE) 

Are _______________(P), who have _______________(I) compared with those without 

_______________(C) at _______________ risk for/of ______________(O) over _______________(T)?  

MEANING  

How do _______________(P) with _______________(I) compared with _______________(C) 

perceive _______________(O) during _______________(T)? 

 

  

Short Definitions of Different Types of Questions  

Intervention/Therapy: Questions addressing the treatment of a condition, illness or disability.   Etiology: Questions addressing the causes or origins of condition (i.e., factors that produce or predispose toward a certain condition).  

Diagnosis: Questions addressing the act or process of identifying or determining the nature and cause of a condition through evaluation.  

Prognosis/Prediction: Questions addressing the prediction of the course of a condition.  

Meaning: Questions addressing how one experiences a phenomenon.  

Sample Questions 

Intervention:  

In people who have undergone gender-affirming phalloplasty (P), how does an additional pre-operative education class (I) compared to usual pre-operative counseling (C) affect patient and caregiver quality of life (O) 3 months after surgery (T)? 

In people seeking gender-affirming orchiectomy (P), how does using the Informed Consent Model (I) compared to usual WPATH Standards of Care guidelines (C) affect post-operative satisfaction (O)? 

In people who undergo gender-affirming vaginoplasty (P), how does using the robotic peritoneal flap approach (I) compared to traditional penile inversion vaginoplasty (C) impact sexual satisfaction (O) 5 years after surgery (T)? 

Therapy:  

In people who undergo gender-affirming vaginoplasty (P), what is the effect of continuing (I) compared to stopping estrogen therapy pre-operatively (C) on gender dysphoria (O) 1 month before surgery, and 1 month after surgery (T)?  

Prognosis/Prediction:    For people undergoing genital gender-affirming surgery (P), how does having strong social support 

(I) compared to not having strong social support (C) influence the risk of having an emergency room visit (O) in the first 3 months after surgery (T)?  For people who undergo gender-affirming vaginoplasty (P), how does having a history of PTSD (I) compared to people without a history of PTSD (C) influence difficulty with vaginal dilation (O) during the first year after vaginoplasty (T)? 

Etiology:  

Are people who undergo phalloplasty with urethral lengthening (P) who live > 100 miles from a gender-affirming surgery center (I) compared with those who live near a gender-affirming surgery center (C) at increased risk for prolonged urinary catheterization (greater than 1 month) (O) during the first year after urethral lengthening (T)? 

 

Adapted from the PICOT Questions Template; Ellen Fineout-Overholt, 2006. This form may be used for educational & research purposes without permission.