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CC BY-NC-ND 4.0 · Appl Clin Inform 2023; 14(02): 263-272
DOI: 10.1055/s-0043-1763290
Special Section on Patient Engagement in Informatics

Community Engagement in Research and Design of a Transgender Health Information Resource

Brad Morse
1   Division of General Internal Medicine, Data Science to Patient Value Initiative, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States
,
Marvyn Allen
2   One Colorado, Denver, Colorado, United States
,
Lisa M. Schilling
1   Division of General Internal Medicine, Data Science to Patient Value Initiative, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States
,
Andrey Soares
1   Division of General Internal Medicine, Data Science to Patient Value Initiative, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States
,
Kristen DeSanto
3   Strauss Health Sciences Library, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States
,
Brooke Dorsey Holliman
4   Department of Family Medicine, Adult and Child Center for Outcomes Research and Delivery Science, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States
,
Rita S. Lee
5   Division of General Internal Medicine, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States
,
Bethany M. Kwan
6   Department of Emergency Medicine, Adult and Child Center for Outcomes Research and Delivery Science, Data Science to Patient Value Initiative, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States
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Abstract

Background Access to credible and relevant health care information is an unmet need for the transgender and gender-diverse (TGD) community. This paper describes the community engagement methods and resulting community priorities as part of a codesign process for the development of a Transgender Health Information Resource (TGHIR) application.

Methods A lesbian, gay, bisexual, transgender, and queer advocacy organization and an academic health sciences team partnered to establish a community advisory board (CAB) of TGD individuals, parents of TGD individuals, and clinicians with expertise in transgender health to inform the project. The analytic-deliberative model and group facilitation strategies based on Liberating Structures guided procedures. Affinity grouping was used to synthesize insights from CAB meeting notes regarding roles and perspectives on the design of the TGHIR application. We used the Patient Engagement in Research Scale (PEIRS) to evaluate CAB members' experience with the project.

Results The CAB emphasized the importance of designing the application with and for the TGD community, including prioritizing intersectionality and diversity. CAB engagement processes benefited from setting clear expectations, staying focused on goals, synchronous and asynchronous work, and appreciating CAB member expertise. TGHIR application scope and priorities included a single source to access relevant, credible health information, the ability to use the app discreetly, and preserving privacy (i.e., safe use). An out-of-scope CAB need was the ability to identify both culturally and clinically competent TGD health care providers. PEIRS results showed CAB members experienced moderate to high levels of meaningful engagement (M[standard deviation] = 84.7[12] out of 100).

Conclusion A CAB model was useful for informing TGHIR application priority features. In-person and virtual methods were useful for engagement. The CAB continues to be engaged in application development, dissemination, and evaluation. The TGHIR application may complement, but will not replace, the need for both culturally and clinically competent health care for TGD people.

Keywords

library science - mobile app - health care informatics - human-centered design - patients

Protection of Human and Animal Subjects

This work was determined “not human subjects research” according to the Colorado Multiple Institutional Review Board (Protocol no.: 19-1562).




Publication History

Received: 15 September 2022

Accepted: 20 December 2022

Article published online:
05 April 2023

© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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