Systems Approach to Participant Retention

Context

The Neighborhoods & Networks (N2) study at the Chicago Center for HIV Elimination tracked HIV prevention and treatment behaviors among 400 Black sexual minority men and trans women through multiple longitudinal waves. When I joined as Research Specialist, response rates had dropped to 13%—a critical threshold that threatened the validity of longitudinal findings.

My role: Redesign operational infrastructure and participant experience to improve retention while building sustainable systems for future cycles.

Problem

How might we redesign research operations to better serve marginalized communities participating in longitudinal health studies?

The 13% retention rate reflected several interconnected operational challenges exacerbated by the COVID-19 pandemic:

1. Operational Fragmentation

• Scheduling via scattered emails and spreadsheets

• No centralized tracking of contact attempts or outcomes

• Inconsistent protocols across interviewers

• Limited visibility into what was actually working

2. Incentive Design Plateau

• Increasing monetary incentives showed diminishing returns

• Leadership recognized further increases risked ethics concerns about coercion

• Didn't address actual participation barriers

3. Knowledge Management Gaps

• Process data existed but wasn't systematically captured

• No way to evaluate which strategies worked for which participants

• Pandemic-related staff turnover and slower university hiring created knowledge transfer gaps

Solution

I approached this as a service design challenge, redesigning the end-to-end system across four interconnected layers:

1. Data Infrastructure: Building the Operational Backbone

Designed a centralized REDCap database to capture previously invisible operational data:

• Real-time scheduling dashboard

• Contact attempt logging (calls, emails, voicemails, scheduled appointments, unable to reach)

• Incentive disbursement tracking

• Interviewer performance metrics

• Cohort status monitoring (active, unreachable, deceased)

  
  

This was operational UX design—the system served multiple users while enabling evidence-based retention decisions.

Unexpected Insight from Data

The system revealed that many participants had died during pandemic years, while others had lost stable housing, phone service, or internet access. Staff turnover during this period meant lost institutional knowledge at a critical time. This provided critical context for co-PIs and funders: retention challenges reflected real instability in our community, informing more responsive outreach strategies.

2. Participant Experience: Human-Centered Incentive Redesign

I analyzed no-show patterns and participant feedback to understand attendance barriers.

Key insight

Transportation emerged as a significant barrier preventing people from attending scheduled appointments.

Solution redesign

• Maintained appropriate base incentive (respecting participants' time, expertise, and intimate data—especially important for over-researched marginalized populations)

• Added Lyft ride coverage (removed transportation barrier)

• Provided CTA passes for return trip (practical benefit + autonomy)

  
  

This approach recognized that equity means both honoring participants' contributions and removing structural barriers to participation.

3. Visual Training Materials: Operationalizing the System

Created visual training materials that helped staff communicate the redesigned system clearly and consistently.

Referral Program Poster

Participants could earn bonuses by recruiting from their social networks, but the process lacked clear communication. I designed a training poster for the team:

• Clear value proposition: up to $200 in bonuses

• Step-by-step visualization

• Simple referral mechanism (custom codes)

• Transparent eligibility criteria

Referral program training poster showing incentive structure and recruitment process

This helped interviewers communicate the program consistently across all participant interactions.

Study Cycle Overview Poster

Created a training overview helping staff explain the participant journey:

• Two-session structure with clear expectations

• Timeline and incentive breakdown

• Location and logistics

• Lyft partnership

  
  

Study cycle training poster detailing two-session structure, incentives, and transportation support

Design principle: Clear communication builds trust with communities historically exploited in research.

4. Capacity Building: Training and Performance Systems

Built systems for sustainable team operations:

• Recruitment & Hiring: Disseminated postings, participated in interviews, contributed to hiring decisions for intern interviewers

• Training: Led training on participant protocols, data systems, cultural competency, and trauma-informed practice

• Performance Tracking: Developed metrics in REDCap tracking completion rates, data quality, and scheduling efficiency

• Documentation: Created protocols for knowledge continuity across study cycles

Results

• 2.5x Response Rate Improvement: 13% → 32% over six months, enabling the study to meet data collection targets

• Critical Context Discovery: Data system revealed community mortality and instability patterns, providing essential context for funders and informing more responsive outreach strategies

• Scholarly Impact: Co-authored Duncan, D. T., Park, S. H., et al. (2023). "HIV Care Engagement Is Not Associated with COVID-19 Vaccination Hesitancy...among Black Cisgender Sexual Minority Men and Transgender Women in the N2 COVID Study." Vaccines, 11(4), 787.

Enabling Time-Sensitive Public Health Research

The improved retention (13%→32%) provided the robust sample (N=400) necessary for statistically significant findings during COVID-19 vaccine rollout, demonstrating how service design in research settings has real-world impact beyond the immediate project. We found out that HIV care engagement didn't predict lower vaccine hesitancy in Black LGBTQ+ communities, which can inform future public health messaging.

What This Demonstrates

• Systems thinking: Data infrastructure surfaced underlying community challenges beyond operational metrics

• Human-centered problem solving: Addressed actual barriers (transportation, instability) rather than assumed solutions (more money)

• Service design impact: Operational improvements enabled peer-reviewed research on health equity

• Equity-centered practice: Designed systems responsive to communities experiencing crisis while honoring their contributions

• Measurable outcomes: 2.5x response rate improvement, scholarly publication, sustainable operational model