Racial Equity and UX: Transforming Health Registries through User-Centric Design

Introduction

When the pandemic first hit, I was contracted to design a clinical study designed to improve clinical trial registration among Black and Latinx groups.

The study consisted of two phases. Phase I was dedicated to learning more about Black and Latinx experience and perception of clinical trials and registering for clinical trials.

My team and I were well aware of the long and storied history of systemic violence towards Black and Latinx individuals. One of many consequences is that White individuals are over represented in clinical trials, particularly with respect to Alzheimer's disease. That means that much of what we know and recommend does not include Black and Latinx individuals.

Therefore, in Phase I, I wrote the IRB protocol to approve us for 40 interviews studying attitudes, beliefs and usability issues among online Alzheimer's clinical trials registries specifically among Black and Latinx participants. I wrote the in depth interview guide and oversaw the implementation from start to finish, supervising two other researchers and owning all budget and timeline constraints, in addition to the client communication and IRB protocols.

The Implementation

The study was especially tricky during COVID, any in person or collaborative efforts would be limited by the pandemic regulations. The whole study was conducted remotely. To surprise, we leveraged Craigslist with great success, almost to the exclusion of any other platform (UserInterviews, Respondent, etc ...).

During each interview, we asked them about their knowledge of and experience with Alzheimer's and Alzheimer's clinical trials. Afterwards, we showed them one of four registries at random to serve as a "control" for the state of usability with clinical trial registration forms.

The findings that emerged were both systemic and usability related.

First and foremost, every participant mentioned that they either felt there were not enough Black or Latinx physicians, and that sometimes they felt their concerns were overlooked because of their race. They were also acutely aware of the checkered history of the US medical system, which influenced their perception of online registries. The predominant emotions were suspicion and unease, particularly if sites didn't contain testimony of a positive experience or physicians/clinical staff who "looked like them."

There were some other usability flaws including confusing language, no auto save features, some were difficult to find and it was unclear what happens once users submit a form.

The depth of the findings speaks to the power of qualitative research. As is often the case, the user experience encompasses so much more than the functionality and usability of a website. Learning about how potential clinical trial registrants have been affected by the medical system, and their perceptions of physicians and trials, armed us with profound insights to develop a culturally relevant and specific registry.

The Next Steps

Drawing on the study findings, our research team collaborated with designer to implement these findings and enhance the appeal of Alzheimer's clinical trial registries:

1. Clarifying Messaging and Purpose: Clear messaging and an inviting interface emerged as attractive features among our interviewees. We aimed to keep our message concise and readable to ensure clarity and resonance with diverse audiences.

2. Building Trust through Representation: Creating a compelling product starts by building trust and credibility among the user base. In our research, we found that trust building elements included a diverse clinical team, testimonials by past participants and clear contact information. By showcasing shared experiences and mutual support, registries fostered a sense of belonging and credibility among participants.

3. Optimizing Usability: Usability emerged as a critical factor in user engagement. We implemented standard UX heuristics to streamline registration processes, simplify form layouts, and provide clear navigation pathways. By addressing usability barriers, registries became more accessible and user-friendly.

4. Tailoring Motivational Strategies: Another key element of success was tapping into intrinsic and extrinsic motivational factors among our users. We tailored motivational messaging to resonate with stories we had heard, including personal experiences with Alzheimer's, familial ties, and altruistic goals. By aligning registry objectives with participant aspirations, we built deeper connections and improved sign up rate.

Impact

After we created a prototype, we tested it against a control which combined the best design elements across all registries in the qualitative study. The following is a summary of the successful elements of our prototype as compared to the control:

1. Increased Diversity: By addressing concerns over racial biases and building trust through representation, our registry increased sign up participation among Black and Latinx individuals.

2. Enhanced User Experience: Usability enhancements led to a notable increase in user satisfaction and completion rates. Participants reported greater ease in navigating registries and completing registration processes.

3. Improved Trust and Credibility: Through adding testimonials and increasing visible representation of Black and Latinx staff on the registry, we bolstered credibility. Participants expressed heightened trust and confidence in registry initiatives.

4. Greater Motivation and Engagement: Tailoring motivational strategies to diverse participant needs resulted in heightened engagement and sustained participation. Participants felt empowered to contribute to research efforts and make a meaningful impact on healthcare outcomes.

Conclusion

The qualitative usability study served as a catalyst for expanding user experience beyond the traditional scope of technical usability and incorporating more of the histories, experiences and contexts of our user base. This is especially important when working with individuals marginalized by society and institutions. We demonstrate here that skills such as empathy, skilled qualitative facilitation and a willingness to expand beyond traditional usability constructs pays dividends in the strategy phase of research.