Information for Participants
Want to volunteer for research?
If you are thinking about taking part in a research study, start with this page. The Department of Health reviews research before it starts, and monitors it along the way to make sure it is safe, and that people are treated fairly and with respect. We want to hear from you if you have questions. Don't volunteer for research if you have questions, or are unsure. Call us before you start, or at any time during the study. You can call our office, toll free.
Making sure research is done ethically.
The Department reviews all research before it starts, and also continues to review it while it is going on. The people who review the research have nothing to do with the study, and are independent of the research. They make sure it is done in an ethical way. People from the community are part of this review. If new information changes what we know about the research study, or for any reason, community members involved in this process can stop research if they think it is not right to continue. Researchers will:
- Respect you when you volunteer for a research study. Researchers will make sure you understand what you will be asked to do in research. Researchers will get your informed consent before enrolling you in research. They may also include the community where you live in the design and conduct of research.
- Try to make sure you benefit from research. Researchers will conduct research that benefits the people who have volunteered for research or their communities. An example of a benefit of being in a research study is that you might learn more about how to take care of your health. Researchers minimize the potential risks of being in a research study. For example, researchers take great care to make sure personal information you tell researchers is not shared with anyone else, unless you ask them to.
- Treat you fairly--after all, you are giving your time to volunteer to be part of a research study. Researchers will make sure that some people don't benefit from research at your expense. Researchers will make sure you know who is responsible for the research study, how you can ask for more information, how to get answers to your questions from someone not involved in the research study, and what to do if you have a complaint.
Our review helps you make sure that research is done ethically. Come see for yourself: our meetings are open to the public. We would like to hear your perspective and thoughts about research. You might even want to volunteer to be part of the committee that reviews research.
Who can you talk with if you have questions?
- Ask the researcher if you have questions before volunteering for research. You can also ask your doctor before volunteering for research, and talk things over with your friends and family.
- If you have questions during the study, ask the researcher or study staff.
- If you want to talk with someone else independent of the research--someone not involved in the research, you can call the Florida Department of Health IRB. The IRB is a committee of people who can answer your questions, but who are not involved research. The phone number is (866) 433-2775 (toll free in Florida) or (850) 245-4585.
- You can ask the IRB questions before you volunteer for research, or during a study, or after a study is over.
When you contact the program, you information is confidential.
Why consider participating in research? Research can improve public health.
- Before choosing to become a research volunteer, get the facts.
- Research is a study done to answer a scientific question, not to provide treatment.
- Volunteering for a research study is your choice. You do not have to participate if you do not want to.
- Both researchers and volunteers have responsibilities in a research study. Know what you’re getting into.
- Ask questions so you understand what’s involved.
What is Research?
- Research is done to answer a scientific question, not to provide treatment. Examples include studies designed to test improved treatment for HIV, improved laboratory tests for diseases like hepatitis, and studies designed to learn about ways to increase healthy behaviors like exercise and good parenting.
- The new method may be better than, the same as, or worse than standard treatment.
- Participants in a research study may or may not benefit.
- People in the future may benefit from research as scientists learn more.
Responsibilities of Researchers
- Create a detailed plan for research, called a protocol. Research can’t start until a committee called the Institutional Review Board agrees the protocol answers an important scientific question, is well planned, is as safe as possible, and is ethically sound.
- Check that potential volunteers fit the group of people to be studied.
- Insure that participants understand what’s involved, and voluntarily give their informed consent.
- Insure that any safety issues are addressed promptly.
Responsibilities of Volunteers
- Understand your choices. Understand what the study involves, and what other options are available.
- If the researcher is also your healthcare provider, understand the difference between what is done as part of normal care and what is done for research.
- Ask questions about anything that is unclear to you.
- Know what is expected of you as a participant.
- Keep the researcher informed of any changes you experience while participating in the study.
Questions to ask the researcher
- Why is the study being done? Have there been previous studies? If so, what were the results?
- For medical studies, how is the research different from regular medical care, and how might it impact regular care?
- What are the alternatives to participating in research?
- Does the study involve any costs? Will insurance pay for extra costs during a study?
- How will I be notified if an unanticipated problem happens or if the risks or benefits of the study change?
- How is my privacy being protected?
- What happens if I need to withdraw from the study? What happens if the study is closed by the researcher or drug company? Can I switch from one study to another?
How to learn more
Deciding whether to participate in research is an important decision. The following websites can help you learn more.
An Introduction to Clinical Trials National Institutes of Health
Making an Informed Decision
A Guide to Understanding Informed Consent National Cancer Institute
Clinical Trials and Insurance Coverage National Institutes of Health
Where to find research studies currently enrolling participants
Contact your health department for information about research conducted by your County Health Department
Listing of Clinical Trials
EmergingMed.com Matches patient condition with clinical trials
CenterWatch.com Search 25,000 government and industry-sponsored research projects
SearchClinicalTrials.org Searches Multiple clinical trials websites for trials, news, and results
Cancer.gov American Cancer Society free trials-matching service