How engaging a wide range of end-users in a human-centered design approach paved the way for PrEP introduction: A Zambia case study

As a newcomer to design thinking — an iterative process in which we seek to understand the user, challenge assumptions, and redefine problems to identify alternative strategies and solutions that may not be obvious — I am finding it helpful for developing and implementing new public health approaches. Human-centered design (HCD) attempts to understand the expressed and latent needs of end-users to develop the ideas for transformational change.

JSI through the USAID DISCOVER-Health Project used a human-centered design (HCD) approach to engage members of high-risk communities.

I regularly depend on (and learn from) JSI’s HCD experts and partners including IDEO.org, Matchboxology, and Media365, who’ve shown how design can improve global health and how design thinking allows end-users to find homegrown solutions to challenges. HCD involves interviews with end-users and other stakeholders, journey mapping, and developing personas to understand where people are and what they need — not where we think they are and what we think they need.

In 2018, as JSI prepared for pre-exposure prophylaxis (PrEP) rollout in Zambia, we decided to use HCD to understand the needs of and design a campaign targeted to end-users by asking How can we design a campaign that understands Zambians and what will help them use HIV prevention products like PrEP?

In this blog, I describe challenges to and the application of an end-to-end HCD approach to learning about the community experience in prevention approaches. The approach also helped us understand more about PrEP use and acceptability, which aided the roll out of the biomedical approach and revitalized HIV messaging.

JSI and Media 365 designed a study protocol, including question guides and facilitator manuals, and collected and analyzed existing data and baselines studies. PrEP data was scant and insufficient to answer the main study question, so in addition to the literature review, JSI collected data through focus group discussions and key informant interviews.

The study sought to understand the knowledge, beliefs, and attitudes of end-users toward HIV-prevention, as well as their understanding of HIV risk and factors. It also looked at the barriers to and facilitators of people’s interactions with the health system and health workers when accessing HIV prevention products and services.

Findings

Most study participants had not heard of PrEP, and those who had indicated that they had little access to reliable information about it. All participants had questions and reservations about PrEP, especially because the Ministry of Health had not approved the intervention formally, and Zambians see the MOH as the most credible source of health information. Our study made clear that without explicit MOH endorsement, PrEP would struggle to gain acceptance and traction in Zambia.

HCD is a design thinking approach that creates solutions by eliciting the perspectives of end users, throughout all steps of the problem-solving process.

The study also illuminated a vacuum in HIV-prevention awareness campaigns, with the result that many people, especially key populations such as females 15–24 and males 20–34, do not see themselves as at risk of HIV, despite engaging in high HIV-risk behaviors.

These conversations revealed the complexities of building acceptance of and demand for PrEP among end-user groups. For example, stigma and discrimination affect each group’s access to care differently and have profound implications for discussing and building demand for PrEP. The study clarified the various needs and challenges of end-user groups and informed the development of strategies and interventions to ensure that PrEP services would be comprehensive and sustainable.

Outcomes

As of June 2020, the USAID DISCOVER-Health Project had supported 19,509 clients ever-enrolled on PrEP; trained 288 providers; and rolled out PrEP to 267 service sites, including all project-supported facilities, 24 DREAMS centers, and 13 correctional facilities. These achievements were in part a result of Zambia Ending AIDS, a fresh nationwide brand and campaign that JSI and Media 365 helped the MOH develop.

Launched in April 2019, Zambia Ending AIDS supports communication and advocacy on the country’s efforts to control the HIV epidemic by 2020, sustain control beyond 2020, and end AIDS by 2030. The campaign seeks to overcome “HIV campaign fatigue” and reignite engagement in HIV prevention. Even the colors were new, as target audiences indicated boredom with the red ribbon and were tired of fear-based HIV messaging. Zambia Ending AIDS calls for “taking control to end AIDS; respecting self and others; making a difference,” and declares that “we are in this together!”

Check out the many excellent tools and campaign materials. The bulk of the campaign’s reach was through social media: see its Facebook page. For more information on this work, see the technical update Using Human-Centered Design to Build Acceptance for PrEP Introduction in Zambia.

This effort, my first experience with HCD, really changed my perspective on how we design and implement HIV prevention programs. It seems simple to say that “ we engage the end user,” but HCD takes that a step further — it systematically and thoroughly learns about the end user; promotes multi-disciplinary collaboration with various stakeholders; and tests, revises, and tests again — to get the message, product, intervention right.

Written by Sean Maher, Senior HIV Advisor

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JSI is a public health consulting firm that works to improve the health and well-being of underserved and vulnerable people and communities throughout the world