Study Participation: What Is Important to Know

Let’s say you are on social media and see an advertisement recruiting participants for a local research study. The study seems interesting, and you want to learn more. Perhaps you have a few questions or feel a bit nervous. What will they expect you to do during the study? Do you have to agree to participate right away? What if you change your mind later? What are the incentives for participation? Could the study be harmful for you in any way?

The University at Buffalo Clinical and Translational Science Institute (CTSI) works closely with researchers and research staff to help recruit study participants from the community. We recently sat down with two veteran UB project coordinators to tackle some frequently asked questions.

Discussing what is important for study participants to know are Colleen Kilanowski, who has worked on single and multi-site projects focusing on obesity, multiple sclerosis, Parkinson’s Disease, and cancer and cannabis for over 20 years; and Constance “CeCe” Duerr, who has worked on single and multi-site projects focusing on obesity, gambling, predictors of substance use and depression, and smoking and vaping studies for over 25 years.

Participant Rights

The rights of participants are protected throughout an entire study. To begin recruitment, studies must receive approval from an internal board focused solely on protecting participants.

“Research studies have to go through rigorous review by an Institutional Review Board (IRB) to make sure your rights as a research participant are being protected,” shares Duerr. “The study cannot begin until the IRB gives approval.”

Following initial approval, studies are typically reviewed by the IRB on a yearly basis. All changes made to study materials or procedures must also undergo review.

“All research staff have to complete extensive ethics training before being allowed to work with human participants,” says Duerr. Staffers are required to complete refresher trainings.

Other participant rights include:

• Education about the goals of the study
• An understanding of all potential benefits and risks involved with participation
• Knowledge of how information will be stored and who will have access to this information
• Having ample time to decide whether to participate
• Knowing how to follow-up with questions about the research and participant rights

Duerr says it is also important for participants to know that they “have the right to stop participating in a research study at any time with no adverse consequences.”

How to Decide If a Study Is Right for You

Deciding whether to participate in a study can be overwhelming. A good first step shared by Kilanowski is to familiarize yourself with the details.

“I encourage volunteers to read up on the study from recruitment materials and speak to study staff,” she says. “This will give the information that you need to make a decision if a study is right for you.”

As you learn more, it is best to try to gather a clear picture of the expectations of participants. According to Kilanowski, “Volunteers should understand all the tasks they are asked to do as part of the study, the risks and benefits of doing the study, and the time required. This is the essential information to make a sound decision about participating and sticking with it.”

Duerr says another practical consideration is to ponder “whether you have the time and energy to participate before taking steps to join. If you know you will not have the time to complete all visits or requirements, do not pursue the study.”

Finally, it is important to determine if you support the overall goal of the research study. It is vital that all questions have been answered and that you feel comfortable with the benefits and risks of participation.

Benefits of Participation

UB experts stress that it is important to weigh the pros and cons of joining the study. Ask yourself some of the following questions:

• How will you benefit from participating?
• Will this research make a positive impact on society?
• Would you recommend participating to a friend or family member?

As a research coordinator, Duerr believes the top reason members of the community should consider participation is clear: “You, the study participant, are critical! Without you, scientific advances would come much more slowly or not at all.”

Interested in learning more about participating in studies at UB? Visit the Participate in Research portal for a list of actively recruiting studies or sign up for the Buffalo Research Registry to be connected to future research opportunities.