Enabling clinical trial participants to access their medical test results can significantly increase enrollment and engagement in research studies, according to a new study by researchers at the University of Illinois Chicago (UIC). The research, conducted as part of a long-COVID study within the RECOVER initiative, highlights that returning results to participants can also yield secondary health benefits.
The study, published in the Journal of Clinical and Translational Science, involved interviews with volunteers in the Illinois branch of the RECOVER initiative, a national study focused on individuals diagnosed with long COVID. The findings revealed that approximately two-thirds of participants valued receiving results from procedures such as blood work and genetic screening. Many participants subsequently used this data to facilitate follow-up conversations with their primary care physicians.
Participant Preferences and Outcomes
Nearly three-quarters of study participants between the ages of 18 and 65 shared their test results with their primary care providers. Some participants reported initiating new treatments as a direct result of these interactions, underscoring the potential for improved healthcare outcomes. While most participants preferred receiving results through the online portal MyChart, half of the Spanish-speaking interviewees (one quarter of the study pool) preferred communication via phone, potentially due to language barriers and the opportunity to ask clarifying questions.
Addressing Participant Anxiety
However, the study also noted that nearly one-quarter of participants reported experiencing worry and anxiety upon receiving their test results. Denise Kent, assistant professor in the colleges of medicine and nursing at UIC, emphasized the importance of utilizing experienced clinicians, such as emergency/critical care nurses and nurse practitioners, to deliver information and address participant concerns effectively.
Recommendations for Future Studies
Kent stressed that researchers need to proactively plan and budget for returning research results in a meaningful way. "Researchers need to budget and plan before the study starts to return research results effectively and meaningfully," Kent said. "This shouldn’t be a conversation to have in the middle of a study."
Diversifying Clinical Research
The study suggests that engaging with research participants by sharing their results may also help diversify the patient pool for clinical research, adding value beyond traditional compensation methods. Furthermore, these interactions can facilitate connections to affordable health insurance and primary care services, such as those offered at UI Health’s Mile Square Health Center, which provides care regardless of a person’s ability to pay.
"It’s a win-win," Kent said. "It’s a win for research, it’s a win for science, and it’s a win for UIC in our community."
