The disproportionate impact of COVID-19 on communities of color has been well documented. Existing studies indicate that an infection during pregnancy can lead to severe conditions such as preeclampsia, preterm birth, stillbirth, and gestational diabetes. To address this equity gap, the Pima County Health Department in Tucson, Arizona, received a grant from the Federal Office of Minority Health to strengthen community access and engagement with COVID-19 and related services. Tucson shares the longest border with Mexico of any county in the USA, with a large, underserved population of Latina/x/o people. The Advancing Health Literacy program (AHL) brought together a vibrant Community of Practice, including local community-based organizations such as the YMCA, library system and adult literacy providers, a clinical partner that offers low-cost health services and experts in measurement and evaluation with the design team from Dalberg Design (DD). AHL focussed on two goals: increasing the number of COVID-vaccinated Latina/x/o people and improving health literacy and experience for both the clients and the practitioners providing care.

Working closely with our community partners, DD led a year-long Human-Centered Design process to build trust, bring a diverse community to the table, understand their challenges from their perspective(s), and define opportunities for intervention for our partners to pilot alongside the community. During the foundational research sprints – which included community members and clinical staff – the team uncovered a wealth of information revealing difficult experiences for Latina/x/o clients across the entire healthcare journey. Patients expressed difficulty navigating a complex system that is massive, unfamiliar, and bureaucratic, emphasizing that often, their immigration status severely limited their choices and ability to access care consistently. In addition, extremely short clinical visits, difficulty with language, and cultural barriers affected their ability to communicate with practitioners during visits, causing frustration, a general lack of trust, and adverse health outcomes. Furthermore, COVID was deemed secondary to the myriad other issues in their lives. Clinical conversations focussed on COVID-19 tainted their receptivity to the vaccine by not recognizing the more critical health challenges these patients and their families struggle with.

Alongside the community of practice, DD synthesized these learnings into the most promising opportunities for design and led co-creation and prototyping sprints to select two interventions for piloting. The Community Pilot, owned by CBOs with experts in adult literacy, focussed on providing in-person and virtual workshops augmented by WhatsApp support groups and led by local Health Promotoras for clients to learn how to navigate the local healthcare ecosystem better. Considerations for the workshops included immigration status, insurance and payment plans, and access to local clinics. The Clinical Pilot focussed on improving the clinical experience for both clients and practitioners by including a client-facing Health Promotora in the clinic waiting room, along with a suite of supporting tools to capture patient goals, strengthen dialogue with clinicians and assess levels of trust. Our Measurement & Evaluation partners recently evaluated both pilots, with results to be published in 2024.

PRIORITIZING EQUITY

From the project's onset, the Community of Practice demonstrated an unwavering commitment to equity. Several questions emerged when considering the participation of the primary clients and community members in the HCD process. Here, we highlight some of the questions we faced and the decisions we made.

How might we compensate participants fairly for sharing their lived experience?

The success of our HCD activities is tied to the quality, diversity, and reach of our participant pool. A large part of the planning for the HCD activities in the AHL project included defining participant profiles accounting for a range of primary and secondary criteria (i.e. age range, sexuality, pregnancy status, COVID vaccination status, and more) to engage with diverse perspectives on the subject matter. Through the project's HCD sprints (foundational research, co-creation, and prototype testing), we engaged with 56 primary clients (Hispanic and Latina/x/o people, ages 20-45, able to get pregnant), 21 community members who support the clients in their day-to-day, and 27 practitioners providing care in the local healthcare system.

When calling on participants from underserved and underrepresented communities to talk about personal experiences around a delicate topic such as healthcare, it isn't easy to define a fair compensation model. The HCD engagement required deep emotional and cognitive work derived from people's lived experience, and it was essential for us to push for a fair valuation of this work. As a team, we focussed on leveling the playing field between the hierarchies of government and the communities they serve. As a collective, we also understood that valuing experience equitably happens at various levels—not just pay rate—we needed to account for ways to provide our participants more freedom, flexibility, and choice. Furthermore, we needed to consider compensation for transportation to the sessions and childcare.

Traditionally, government agencies compensate participants through $15-25 gift cards to a specific store or provide specific goods like pregnancy gift bags. The value of the gift cards seemed unfair considering the ask, and the two options meant we had to assume that we knew best what people needed. Through continued discussion and careful consideration of the PCHD processes and limitations, we were able to dedicate a large portion of the grant budget, totalling $148,000, to purchase Visa gift cards to compensate participants at $100 per hour for their time (including travel). The gift cards allowed the participants to spend the funds on a wide range of goods and services of their choice. We also had to ensure that the income from participating in HCD sessions didn't put their federal benefits at risk. It's worth noting that we supported our direct client to overcome substantial resistance to this level of compensation within the health department. The model has since received much national attention as it is unique for a government entity to pay $100 an hour for this type of contribution.

CO-CREATION & PROTOTYPE TESTING PROCESS

After gathering the Community of Practice to share the foundational research findings, the DD team led the group through facilitated exercises to generate and prioritize a set of How Might We questions for the Co-Creation phase. In turn, the DD Team translated the opportunity areas into six scenarios for participants to use as creative briefs to generate solutions (see co-creation reference images). During the sessions, the participants generated a wealth of ideas to solve the various challenges portrayed in the scenarios. The ideas centered on enabling better communication between clients and practitioners, finding ways to help bridge the cultural gap between the community seeking care and the practitioners providing it, and assisting clients with various immigration statuses in navigating the care options available. Several of these ideas were evaluated and prioritized by the CoP to be refined and tested through the prototyping sprint.

For the prototyping sprint, the DD team created a set of storyboards showcasing the prototypes, enabling participants to understand the ideas through a familiar story and, in turn, provide constructive feedback on improving them (see prototype reference images). After synthesizing our findings from testing, we worked with the CoP to select the most promising ideas for piloting, taking into account many practical considerations—HIPA and patient privacy, the clinic's Electronic Health Record system, and the clinic's staff schedules, the Community-based Organization's staff capacity and ability to bring on new roles. The most promising element that tied the two pilots together was the presence of the Health Promotoras. Since they have lived experience as local Latina/x/o community members seeking care for themselves and their families, they provided a unique opportunity to bridge the cultural gap between the community and the healthcare system.

WHAT IS A HEALTH PROMOTORA?

The Health Promotora model varies depending on who you ask and the environment where it's used. It borrows from the successes of community healthcare workers in that it relies on training trusted and familiar faces from the community to be on the front lines and fill a gap in the local healthcare system, often as volunteers. For this project, the Promotoras are people from the local Latina/x/o community trained to provide basic healthcare navigation information, assist patients in preparing for their visit, and provide follow-ups to connect patients to available health resources.

OUR ROLE IN SUPPORTING THE PILOTS

Once the Clinical and Community Pilots were defined, the DD team transferred ownership by developing supporting materials and providing HCD research-driven guidance to the various organizations implementing the pilot.

The Community Pilot, which involved hosting a series of health navigation workshops for the primary client group, was deployed by the two member organizations in the Community of Practice specializing in adult education and literacy. Leveraging our research insights, the design team provided the organizations with recommendations on the language, features, and deployment channels for effective promotional materials, the basis for the curriculum of the workshops, and the essential elements of the follow-up WhatsApp support group. Outside of this guidance, the two organizations used their expertise in adult education, the support of the Health Department staff, and advice from the Measurement and Evaluation partners to prepare for and deploy the Community Pilot.

For the Clinical Pilot, the design team led the development and refinement of the workflow (see pilot supporting materials reference images), which required alignment with stakeholders within the Community of Practice and key stakeholders from the clinic where the pilots would be deployed. Once the workflow was agreed upon, the team worked with clinical staff on designing and testing the supporting materials for the smooth and effective deployment of the pilot in two clinics: a set of 'COVID Testimonial Posters' for the waiting room, the 'My Health Priorities for Today's Visit' worksheet for the Health Promotoras to use to guide patients in preparing for their visit, a set of 'Cheatsheets' featuring a detailed list of tasks for all the practitioners involved in implementation, a 'Pilot Flag' to track the implementation of the various pilot interventions and a template for the 'Visit Summary Checklist' to hand out to clients so they felt better equipped to follow through with their treatment.

PROJECT OUTCOMES & TESTIMONIALS

While the analysis with our Measurement and Evaluation partners is still in process, initial data and testimonials show positive outcomes from both pilots. Over the three months of the Community Pilot, the member organizations hosted workshops for 243 participants who also enrolled in a WhatsApp group for optional follow-up support. Analysis of the group chats recorded a 36% engagement rate for the 2-month period in which the groups were active. A workshop participant shared the following story highlighting the need for healthcare navigation support: "If my mother had had access to this workshop, it would have positively changed her life. She never went to the dentist and only ever had emergency dental work. I didn't know that there were places we could have taken her for routine dental care."

The Clinical Pilot, led by the partner clinics, trained two Health Promotoras and 13 clinical practitioners to engage with patients in pre- and post-visit activities. Through the experience of the 95 patients who participated in the pilot, the partner clinic saw immediate improvements in patient trust and communication. They have now opened 3 full-time positions for Health Promotoras to join their clinical staff for the first time to sustain and institutionalize the outcomes from the AHL pilot. They have also added an HCD course to their learning management system, which is available to all clinical staff. One of the Promotoras shared the following reflection: "This pilot introduced a culture of equity and trust into the clinic. It allows us to close the gap and service more communities in Pima County."