InsideTraCS — with Emily Olsson

Emily Olsson, CCRP, is manager of the NC TraCS Recruitment and Retention Program, where she works with study teams to optimize projects and build participant relationships to meet accrual goals. She has more than 14 years of clinical research experience and is well-versed in various aspects of clinical trial recruitment and operations. Her expertise focuses on research education and integration, participant-centered design, communication strategies, and tailored recruitment approaches.

Marla Broadfoot, NC TraCS science writer, recently spoke with Olsson about challenges in participant recruitment/retention, recruiting diverse groups into clinical trials, and the Research for Me initiative.

What drew you to clinical research and research recruitment?

I ended up in clinical research completely by accident but can't imagine doing anything else now. With no clear idea of what I wanted to do after college, I became an administrative assistant in the Clinical and Translational Research Center (CTRC) here at UNC. I found myself in an inspiring environment where everyone was there to help. There were researchers passionate about pursuing new innovations, participants with various conditions committed to helping find breakthroughs, and healthy participants volunteering their time to contribute to scientific knowledge—everyone was working together and toward a purpose. I knew pretty quickly that I wanted to be a part of that.

I dove in, training to become a clinical research coordinator and then research project manager, working in several different therapeutic areas. While I loved that research offered me a mix of responsibility and opportunity on a day-to-day basis, I found that participant recruitment and relationship-building was always my favorite part of the process! It's a pleasure to introduce someone to research or to see the pride that they take in being part of a study or trial. Everyone has something to contribute, and it often just takes a sincere conversation to help them find their path to engaging with research.

From your perspective, what are the biggest challenges in the recruitment and retention of clinical trial subjects? How do you and other members of the recruitment and retention team help researchers address those challenges?

This is a hard question because recruitment is complex and impacted by so many different factors. It's important that study teams consider each study and each population and the population segments individually, tailoring their approaches to recruitment and retention every time and remaining vigilant and flexible in monitoring the success of those approaches as the study progresses. One of the most common pitfalls for teams is trying to create a "one-size-fits-all" approach or relying on what's always been done without consideration of alternatives that might be more appropriate or cost-effective for their particular project.

Participants are the backbone of clinical research and are a foundational component of the translational process; inability to recruit adequate participants within the study timeline can have financial, scientific, and ethical implications. The best mitigation strategy is comprehensive recruitment planning up front with stakeholder input and an adequate budget; additionally, early incorporation of evaluation strategies and identification of contingency plans can really boost the odds that a team will be able to effectively engage a diverse and adequate participant population.

To help teams achieve this, our program has developed the Participant Recruitment Resource Center with over 70 templates and resources to get teams started, but we also offer one-on-one consultations with recruitment specialists, recruitment planning assistance, diagnostic troubleshooting, and design and health communication services to provide teams with customized support.

We're also fortunate to work closely with the NC TraCS Community and Stakeholder Engagement and Inclusive Science groups who can connect teams with community or patient panels to provide critical insight on the participant-centeredness of the study design, recruitment strategies, and recruitment messaging.

I noticed that you have a degree in cultural anthropology. How do you think an understanding of culture and language could impact the successful recruitment of diverse groups into clinical trials?

I think that an understanding of culture and language is critical to inclusive, equitable recruitment into trials. Nothing and no one exists in a vacuum—both individuals and researchers bring their own cultural contexts, perceptions, and values to the table when considering the concept of research or research participation.

To ignore the rich and varied contexts in which both the research and individuals involved exist is a mistake. In a lot of ways, clinical research is a culture in and of itself. It's just as important to be able to talk about it in that context as it is to be able to use the cultural context of individuals or communities to be able to frame information in a way that is of value to them. It's important to remember that it's all related; every conversation and interaction we have with a person about research shapes their experience with research culture.

At the end of the day, we are social, collaborative, curious creatures who default to framing new situations with a complex lens of logic, emotion, history, social construct, and our own perceptions and experiences. It will never just be about an outreach strategy or an effective message. Achieving equitable, inclusive participant populations is going to result from many small changes and steps within research culture. It's cyclical—we have to be intentional about how our actions shape others while remaining observant and open to being shaped by the communities we interact with.

What is the Research for Me initiative? How has it democratized participation in clinical research?

Research for Me @UNC is the virtual central access point for any individual interested in learning about or engaging with research opportunities at UNC or UNC Health. The idea actually came from participants and patients—I can't tell you how many times a participant would finish a study with me and say "that was really neat, where can I find other studies to do?" or "my family member has xyz condition, are there studies they can do?" or "I didn't know that I could do research! I thought it was only for really sick people".

At that time, there wasn't anywhere for me to send them! What a missed opportunity to have that curiosity hit a dead end. So, one of my first goals in this role was to create a resource that offered up-to-date, comprehensive, participant-centered information about research participation. Often, research institutions do an incredible job with the science and funding but fail to create a bridge or connection that makes that work understandable, relatable, and accessible to a general population with language and angles that are relevant to them and their lives.

We hope that Research for Me will also allow us to integrate research information and visibility more effectively into the clinical landscape, empowering individuals to interact on their own terms rather than needing to be identified and approached by a study team. Visibility of the site begins to normalize the idea of research as an integral part of the health care experience at UNC, rather than as something outside of the culture. The first step to equitable access to research is just that—transparency and on-demand accessibility in friendly, easy-to-understand language.