A Transgender Health Information Resource: Participatory Design Study.

BACKGROUND: Despite the abundance of health information on the internet for people who identify as transgender and gender diverse (TGD), much of the content used is found on social media channels, requiring individuals to vet the information for relevance and quality. OBJECTIVE: We developed a prototype transgender health information resource (TGHIR) delivered via a mobile app to provide credible health and wellness information for people who are TGD. METHODS: We partnered with the TGD community and used a participatory design approach that included focus groups and co-design sessions to identify users' needs and priorities. We used the Agile software development methodology to build the prototype. A medical librarian and physicians with expertise in transgender health curated a set of 97 information resources that constituted the foundational content of the prototype. To evaluate the prototype TGHIR app, we assessed the app with test users, using a single item from the System Usability Scale to assess feature usability, cognitive walk-throughs, and the user version of the Mobile Application Rating Scale to evaluate the app's objective and subjective quality. RESULTS: A total of 13 people who identified as TGD or TGD allies rated their satisfaction with 9 of 10 (90%) app features as good to excellent, and 1 (10%) of the features-the ability to filter to narrow TGHIR resources-was rated as okay. The overall quality score on the user version of the Mobile Application Rating Scale was 4.25 out of 5 after 4 weeks of use, indicating a good-quality mobile app. The information subscore received the highest rating, at 4.75 out of 5. CONCLUSIONS: Community partnership and participatory design were effective in the development of the TGHIR app, resulting in an information resource app with satisfactory features and overall high-quality ratings. Test users felt that the TGHIR app would be helpful for people who are TGD and their care partners.

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

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.

Co-design of the Transgender Health Information Resource: Web-Based Participatory Design.

BACKGROUND: There is an urgent and unmet need for accessible and credible health information within the transgender and gender-diverse (TGD) community. Currently, TGD individuals often seek and must find relevant resources by vetting social media posts. A resource that provides accessible and credible health-related resources and content via a mobile phone app may have a positive impact on and support the TGD population. OBJECTIVE: COVID-19 stay-at-home orders forced a shift in the methods used in participatory design. In this paper, we aimed to describe the web-based participatory methods used to develop the Transgender Health Information Resource. We also described and characterized the web-based engagement that occurred during a single session of the overall design process. METHODS: We planned and conducted web-based design sessions to replace the proposed in-person sessions. We used web-based collaborative tools, including Zoom (Zoom Video Communications), Mural (Mural), REDCap (Research Electronic Data Capture; Vanderbilt University), and Justinmind (Justinmind), to engage the participants in the design process. Zoom was used as an integrated platform for design activities. Mural was used to perform exercises, such as free listing, brainstorming, and grouping. REDCap allowed us to collect survey responses. Justinmind was used to create prototypes that were shared and discussed via Zoom. Recruitment was led by one of our community partners, One Colorado, who used private Facebook groups in which web-based flyers were dispersed. The design process took place in several workshops over a period of 10 months. We described and characterized engagement during a single design session by tracking the number of influential interactions among participants. We defined an influential interaction as communication, either verbal or web-based content manipulation, that advanced the design process. RESULTS: We presented data from a single design session that lasted 1 hour and 48 minutes and included 4 participants. During the session, there were 301 influential interactions, consisting of 79 verbal comments and 222 web-based content manipulations. CONCLUSIONS: Web-based participatory design can elicit input and decisions from participants to develop a health information resource, such as a mobile app user interface. Overall, participants were highly engaged. This approach maintained the benefits and fidelity of traditional in-person design sessions, mitigated deficits, and exploited the previously unconsidered benefits of web-based methods, such as enhancing the ability to participate for those who live far from academic institutions. The web-based approach to participatory design was an efficient and feasible methodological design approach.