January 22, 2026

T1D Exchange (T1DX) Health Equity Advancement Lab (HEAL) Meeting:

January 22, 2025, 1-2 pm ET, Zoom

Participants: Jenise Wong, Ananta Addala, Janine Sanchez, Gwendolyne Jack, Grace Nelson, Judy Grundman, Selorm Dei- Tutu, Shideh Majidi, Janine Sanchez, Ashley Butler, Claire Rainey, Nicole Rioles, Trevon Wright

Agenda:

Time	Item	Facilitator
1:00-1:05 pm 05’	Welcome Welcome	Dr. Dei-Tutu   Dr. Butler
1:05-1:20 pm 15’	Manuscript Update	Dr. Dei-Tutu Dr. Butler; All
1:20-1:45 pm 25’	Emotional Impact of Clinical Encounters in T1D Abstract Overview of ADCES abstract and prior Learning Session discussion Importance of diverse racial, cultural, and lived experiences Discussion of potential patient outreach for interviews	Claire Rainey; All
1:45-1:55 pm 10’	Current Equity projects or initiatives	All
1:55-2:00 pm 5’	Updates and Close-Out Summary of next steps Next meeting: Thursday April 16, 2026, 1-2pm EST	T1DX-QI staff

Manuscript Discussion

• The group had previously discussed writing a manuscript.
• Two abstracts were submitted to ADA (survey data).
• The group will now circle back to the manuscript.
• Data Available in Abstracts

Two abstracts were submitted:

• Correlation of Minoritized Ethnicity Representation Between Patients and Staff of Diabetes Centers Involved in the T1D Exchange QI Collaborative.
• Common Barriers to Health Equity and Factors Actively Addressed to Improve Health Equity in the T1D Exchange QI Collaborative.
• Data available based on the most recent survey shows observed factors and barriers by adults and PEDs.
• Pediatric centers seem to be doing more to address some things.

Addressing Barriers

• Education on trainees.
• Partnership with community organizations.
• Working with other divisions.
• Screening for SDOHs and standardizing how it’s identified and documented.

T1D Exchange QI Equity Practices

• A similar paper was written a couple of years ago, possibly in endocrine practices.
• It may be helpful to look at that paper to frame the current data as an update or interval change.
• The previous paper may have set the foundation for the current data.
• The data from the 2024-2025 survey could be packaged in the context of the previous paper or clearly separated from it.

Demographics

• Data looks at the percentage of staff versus patients identifying as minoritized race or ethnicity.
• The disparity between minoritized patients in type 2 diabetes and staff was striking, especially in adult NPs.
• Pediatric centers may have a better correlation between staff and patient ethnicity.

Staff Diversity and Congruence

• Pediatric type 1 is likely the most congruent because those clinics tend to have more individuals from non-minoritized race ethnicities compared to adult type 2 or type 2 in general.
• Concordance may be helpful but is driven by the prevalence of non-minoritized staff and patients, especially considering the unique insurance coverage in pediatrics.
• The population of pediatric type 2 is heavily weighted towards minoritized youth, which likely influences outcomes more than staff concordance.
• Staff includes the multidisciplinary team (nurses, dietitians, etc.), but linking this to outcomes is challenging due to confounding factors like race.
• Workforce Shortage and Framing
• There is a workforce shortage crisis, especially in pediatrics, and possibly in adults as well.
• Frame the data in terms of the current workforce terrain without necessarily tying it to clinical outcomes.
• This approach can be meaningful and relevant to medical education and training.
• Use diversity reflection as part of the conversation around workforce issues.
• Future Directions and Focus
• Consider updating Ananta’s previous paper to reflect current progress.
• Describe the staffing situation in diabetes centers, highlighting gaps and potential changes over time.
• Focus on encouraging people to enter fields like dietetics and nursing, rather than solely focusing on pediatric subspecialties.
• Data may not specifically address how to get people to be pediatric subspecialists.

Collaboration and Data Analysis

• The data breaks down staff roles, which could be part of the conversation.
• Build upon the previous paper to see where things stand now, considering policy changes.
• Diversifying the workforce should include CDCESs, nurse practitioners, and all members of the medical team.
• Nicole suggested a paper for strengthening practice or hospital strategies to building and mentoring a workforce that reflects the cultural and racial population of the hospital location.
• There may be hospital community partnerships or hospital-led programs that talk about pipeline programs or training programs that intentionally reach out to the community.
• Toolkits from the health offices in Washington, Oregon, and California were better than national toolkits for diversifying workforce and health fields.
• The discussion shifts to the second abstract on the demographics of concordance.
• The workforce needs to be more diverse.
• Grace suggested that this paper talk about how far we’ve come comparing the previous paper and ends with a new question of staffing as the next steps.
• Policies are not enough if the people implementing them don’t understand the culture.
• There is data on concordance of provider or clinician and patient.

Claire’s Abstract Presentation

• Claire shared an abstract at the learning session in Atlanta, an oral presentation called “Exploring the Emotional Impact of Clinical Encounters among People living with type 1 diabetes.”
• She plans to co-present it at ADCS this summer with Christy Beatson from Barbara Davis Center Pediatrics.
• The goal is to incorporate more diverse perspectives and lived experiences, particularly across racial and cultural backgrounds.
• Claire suggests reflecting on previous panels to identify stories that could be highlighted.
• Explore whether patients might be open to being contacted for a brief interview.

Qualitative Study

• The study explored misconceptions about type 1 diabetes and how they can lead to stigma and judgment in clinical care, affecting trust and engagement.
• It aimed to show how person-centered care requires clear, respectful bidirectional communication that addresses both medical and psychosocial needs.
• Personal narratives were gathered from the T1D community, including T1D exchange question of the day respondents and T1D exchange staff living with type one.
• Inductive coding identified themes related to judgment, communication, and care experiences.

Study Results

• 53 stigma-related experiences were identified across six themes: moral judgment and negative framing, misinformed care, dismissal of lived experience, unprofessional interactions, emotional guarding, and inadequate support.
• Stigmatizing clinician attitudes negatively affect both care quality and emotional well-being.
• Empathy, respect, and active listening can reduce harm, build trust, and improve continuity of care.
• Most stories occurred in non-diabetes specialist encounters.

ADCES Education Sessions

• The sessions highlight a collaborative and participant-focused approach.
• Case studies will be used to allow participants to practice the application of concepts in a safe environment.
• Present, discuss, and debrief around three case studies from diverse experiences and backgrounds.

Call for Stories

• Claire is asking for patient stories or connections with patients for brief interviews; all stories will remain anonymous.
• Only the duration of time living with type 1 will be shared, no other identifiers.

Clarification on Clinical Encounters

• The examples heard were not just non-clinicians, but people working in endocrine spaces, such as front desk staff, educators, pharmacists, primary care, and nurse specialty areas.
• Clinical encounters in general shape the patient’s experience or perception of themselves in their care with diabetes.

Suggestions

• Consider qualitative studies that describe the experiences of minoritized individuals.
• Include a story of someone who didn’t speak English and faced issues related to language or cultural understanding.
• Claire is asking if anyone has patients who have had experiences that fit under the identified themes.
• Patients might not be open to sharing, but some may confide in their endo teams.
• Focus is on clinical encounters, narrowed down from broader social encounters for the abstract.
• Asking for patient interviews could turn the project into a clinical study requiring IRB approval and patient compensation.

Logistics and Consent

• Concern about logistics of asking patients to chat without an IRB-approved study or compensation.
• Sharing patient names and diagnoses requires consent due to protected health information.
• Suggestion to have patients reach out to Claire directly to avoid direct sharing of information.
• Ethical Considerations
• Fine line between clinical help and research; research requires consent and IRB approval.
• Need to ensure ethical and unbiased representation of patient experiences.
• Using published qualitative data is a safer approach to build meaningful vignettes without crossing boundaries.

Feedback and Suggestions

• It’s tricky because it’s a different scope than the learning session abstract.
• Consider talking to people with diabetes without research.
• Other diabetes associations with big community focuses might be a place to find people face to face.
• People should be allowed to tell their stories, but there might have to be some sort of agreement to protect people’s privacy data.
• A composite of different patients can be made to make points without using actual patient data.
• Closing the Loop
• The goal is for this to come full circle and come back to clinicians.
• Heartbreaking stories were heard of people who leave their practices.
• From the clinic side, it can be seen as a random loss to follow up.
• The hope is that this can help close the loop and empower for training and core values of treating people like people.

Manuscript Recap

• Dr. Butler, Trevon, and Dr. Dei-Tutu will come up with another outline and go back to the ideas and abstracts.
• The goal is to have a skeleton to work with by the next meeting.
• Publications shared by Dr. Addala: https://pubmed.ncbi.nlm.nih.gov/37806550/ 2022 t1dx qi health equity practices
• https://pubmed.ncbi.nlm.nih.gov/40617391/   

Presentations: 

2025 Survey data for Jan 2026 HEAL meeting

Claire Rainey HEAL Slides Jan 2026 (002)

Recording: https://us02web.zoom.us/rec/share/mld-vVHCcMczK5NcHP1-tu4_F6twmO9f7n2MX5wevHop9TPDJgwnRFVO2_Oid_uX.ahC_a4ZDyIKnFiQb?from=hub

Passcode: r$j.5LCA