The greatest story yet untold from the pandemic is about the incredible generosity of people who stepped up to help their communities by participating in research.
As the Duke Clinical Research Institute (DCRI) celebrates Clinical Trials Day and we progress into the third year of the COVID-19 pandemic, we marvel at the rapid response and ingenuity we have witnessed over the past two years. In addition to the scientists and health care providers credited for these advancements, it is important to acknowledge that each accomplishment would not be possible without the millions of people who participated in COVID-19 research. Whether they volunteered for vaccine trials, provided their data for research efforts on COVID-19 surveillance, or agreed to try medications through a trial when they were sick, these participants are among the many unsung heroes in the pandemic.
At the DCRI, over 160,000 people across the U.S. have signed up to participate in COVID-19 research and an additional 25+ people collaborated on research as advisors. Hundreds of school district superintendents partnered with the ABC Science Collaborative to help study the best ways to safely keep schools open. Ten communities also collaborated with the DCRI to provide free at-home COVID-19 tests to everyone living in their cities. At the DCRI, we’re eager to express our gratitude to every patient and community partner for their contributions during and after the pandemic.
Too often research participants walk away empty-handed without a “thank you” or information about the results of the research they made possible. At the DCRI, there is a focused effort to ensure that participants are recognized and feel appreciated at the end of a study. Renee Leverty, Program Lead for DCRI Stakeholder Engagement, offers these tips to help participants feel appreciated throughout the lifecycle of a study or project:
- A welcome and thank you letter to research participants at the beginning of the study.
- Webinars with study leaders during the trial to provide educational information about the disease, study updates, as well as opportunities for leaders to express gratitude and well wishes.
- Participant newsletters during the trial to share study updates and general information about the disease and clinical research, including participant stories of why they are involved with research.
- A thank you card or letter to research participants at or near the last study visit thanking them for their valuable contribution and notifying them where they will be able to find additional information in the future.
- A letter after the database lock from the research site informing individual participants of their randomization assignment, with contact information if further information is needed.
- A lay summary of aggregate results with a focus of health literacy and cultural humility.
Taking the time to thank participants is one of the DCRI’s six Guiding Principles for Participant Engagement (shown below). Learn more about the DCRI Stakeholder Engagement program. Do you have ideas about how the DCRI could better thank participants? Email dcri-researchtogether@dm.duke.edu with your ideas and needs.
