The unique requirements and experiences of end users are central considerations for design and development.
Iterative participatory design is a core component in the research of Samantha Stonbraker, PhD, MPH, RN, FAAN, FAMIA, associate professor in the Division of Behavioral, Family, & Population Health at the University of Colorado Anschutz (CU Anschutz) College of Nursing. Stonbraker is a nurse-scientist and informatician who works to design and evaluate digital tools that support historically marginalized communities.
Stonbraker approaches this work with a user-centered design perspective, emphasizing the view that the tool’s end users should not merely test the tool at the end, but should be consulted and integrated into the design process from initial idea to final product. Specifically, Stonbraker leverages a Participatory Design approach, where she consults multiple stakeholders and implements their feedback throughout the process.
| End user—a person, population or entity that will ultimately use a tool when it is fully developed. This term is commonly used in fields like software development, website design and clinical informatics to refer to the target audience(s) for a tool, site or resource. |
Stonbraker will present one of these digital tools at the 2026 American Medical Informatics Association (AMIA) Annual Symposium. The digital tool, known as VaxCom, is designed to support conversations between recruitment specialists and people considering participation in Phase I HIV vaccine trials. Specifically, VaxCom provides training on recruitment dialogue, as well as information that is relevant to unique populations in clinical trials.
Stonbraker and the team, including MPIs Christine Rael, PhD, associate professor in the CU Anschutz College of Nursing, and Jorge Soler, PhD, of Precision AQ, hope this tool will help improve representative recruitment in HIV prevention trials. The journey the team has taken in developing VaxCom sheds light on the value of user-centered thinking and participatory design for digital tools and technology.
The development of VaxCom began with a gap the team found in the research.
“Vaxcom grew out of a significant gap in HIV vaccine trials participation that my colleague and MPI on this grant, Dr. Cristine Rael, identified,” said Stonbraker. “Transgender women are disproportionately affected by HIV, yet they represent less than 2% of HIV vaccine trials participants ever. This limits evidence about vaccine safety, tolerability and efficacy in this population and may ultimately affect trust in and uptake of a future HIV vaccine.”
But this wasn’t just a challenge of awareness, they discovered. “Transgender women may encounter discrimination and transphobia during the recruitment process, and recruitment specialists often lack training and resources to address the questions and concerns specific to this population,” said Stonbraker.
“Therefore, we wanted to create a digital tool to support the information needs of potential trials participants and support recruitment specialists to effectively and respectfully interact with transgender women.”
In developing VaxCom, the team leveraged a user-centered design approach called participatory design.
“Rather than building a tool for transgender women and recruitment specialists and asking for feedback at the end, we wanted to build it with them,” explained Stonbraker.
Participatory design seeks to involve a variety of stakeholders in the design process. The idea is that their feedback and contributions throughout the process will help developers create a product that will be usable and effective.
To accomplish this for VaxCom, the team conducted virtual participatory design sessions with seven transgender women as well as seven HIV vaccine trial recruitment specialists. In these sessions, the participants reviewed prototypes and provided feedback about the tool's content, appearance, navigation and flow. For example, they explored where trainings on effective communication with gender expansive folks should appear, what content needs to be in primary workflows and what can make the app more widely generalizable.
Then, between sessions, the team reviewed their feedback and incorporated changes into VaxCom. Finally, the team assessed the usability of the resulting tool in simulated recruitment encounters, using established informatics frameworks and validated measures.
One of the benefits of participatory design is that it consults multiple stakeholders in the design process. With participatory design, developers seek to involve multiple parties that are either (1) using the tool or (2) connected to the use of the tool in some way.
In the case of VaxCom, consulting multiple parties helped create a more comprehensive tool that would benefit all parties involved in this research scenario. “One of the clearest lessons is that intended users have expertise that research and development teams do not,” said Stonbraker. “Transgender women helped us understand what information mattered to someone considering trial participation, while recruitment specialists helped us understand how a digital tool would—or would not—fit into real-world workflows.”
Feedback from stakeholders holds little value if developers do not make changes in response to the feedback. In design, these changes, adjustments, updates, and pivots are known as iteration.
“One of the most important changes challenged our original conception of VaxCom,” explained Stonbraker. “Initially, we designed the tool specifically for recruiting transgender women. But, during design sessions, recruitment specialists pointed out that a tool used only with transgender women would be difficult to implement because recruiters cannot and should not assume someone's gender identity to determine if they can use a tool.”
With this information, the team iterated to make sure the tool was serving its end users. Stonbraker said, “Based on that feedback, we broadened VaxCom for use with all people at risk for HIV while still maintaining information relevant to transgender women... This is a strong example of why designing with end users matters, as we would have missed this large barrier to uptake without their involvement.”
The team’s next iteration is to expand the generalizability of the tool to be useful to enhance recruitment across HIV prevention trials, not just vaccine trials. They are currently planning to apply for additional funding for these developments.
The VaxCom tool, as well as other work that Stonbraker explores in her research, supports a broader narrative: consulting the communities that will benefit from a digital tool can greatly improve the impact and usefulness of that tool.
“How we design health technology can be just as important as what we design,” said Stonbraker. “For other researchers, the broader lesson is to involve intended users early and ask not only, ‘Does this technology work?’ but also, ‘how can we get it to work within your specific workflows?’”
For Stonbraker, VaxCom represents more than a single digital tool. It demonstrates how involving communities from the beginning can lead to technologies that are more inclusive, more practical, and ultimately more effective. As healthcare becomes increasingly digital, that lesson will further enhance and improve technological innovations.