Frequently asked questions about health research and clinical studies
Search the topics below to find answers to frequently asked questions about health research and clinical studies.
Do you have a question about research participation that is not listed here? Submit your question to inhealth@iu.edu
All IN for Health is a program which provides a way to for the public to learn about and get involved in health research in Indiana. All IN for Health hopes to hear from you and learn from you! It is also a resource for reliable health information. The program is made possible by the Indiana Clinical and Translational Sciences Institute (CTSI), a partnership between Indiana University, Purdue University, and the University of Notre Dame.
Health research is broadly defined as the study of human health and sometimes occurs in healthy people through questionnaires, surveys, or interviews.
You can sign up to participate in health research and clinical studies by joining our research volunteer network here. After filling out your profile, you will receive emails about studies that match your interests.
All IN for Health’s goal is to engage the public to help researchers increase the value of their research. Specific ways this can happen include sharing ongoing research in specific communities with those community residents, hearing research related questions and concerns from the public that All IN for Health can address, sharing what researchers have learned from their studies with the public, and offering opportunities for people to participate in research they are interested in. All of this can help improve the health of people in Indiana.
The study of human health is constantly changing. Health research helps us to understand and answer important questions such as attitudes and beliefs about mental health, isolation and drug abuse, among many other topics.
Informed consent is a standard document that you might see if you choose to participate in a study. It is a way for you to provide your voluntary agreement to participate in the research, and states that you understand the study you are participating in and the potential risks involved. This form lists the study procedures, so you know what to expect while you are participating. You will be asked to read this form before participating in any study. You should receive a copy of this consent form for your records.
Anyone can participate in health research or clinical studies. Each study has requirements that must be met before a volunteer can take part, which are called “inclusion criteria.” There are also guidelines that prevent volunteers from participating in certain studies called “exclusion criteria.” These criteria are different for each study and depend on what the study team is trying to learn. Inclusion or exclusion criteria could be based on age, gender, health condition, treatment history, and other medical information.
When you participate in a study, there are guidelines research teams use to protect your personal health information. Personal health information includes your name, address, doctor, and medical information. Different studies may ask for different information. This information is stored on password protected computers. Usually, researchers will remove your name and other direct identifiers (like your date of birth) from your information and replace them with a code. Researchers limit and keep track of who sees your personal health information. To work with your health information, researchers must promise not to try to find out who you are. Researchers will tell you if someone accesses your data who does not have permission to do so.
You can connect with us at inhealth@iu.edu.
You will be connected to opportunities to learn about the thousands of health research studies that are being done in Indiana. You will be able to look at these on our website and get an email notification when a new study opens that fits your interests. If you participate in a study, you can contribute to a greater understanding of different diseases and conditions, how they affect each of us, and how we can best treat and prevent health conditions. You might also be compensated for your time and participation depending on the study.
There are many reasons why people volunteer, including to help others, to help advance science or knowledge about a particular health condition, to possibly improve their own health, or to receive more treatment options that might not otherwise have been available to them.
All IN for Health is currently made up of research volunteers from all 92 counties of the state. This network helps make important health research possible. Without the public’s involvement, research cannot happen.
One example of our impact was when members of the All IN for Health research volunteer network came together to join the largest and fastest enrolling study in IU School of Medicine history, a COVID-19 vaccine study which started in late 2020. More than 500 of the participants in this nationwide study were from Indiana. The results of the study showed that the vaccine was more than 74 percent effective at preventing symptomatic COVID-19 illness.
Some studies will pay you for your participation. Before you agree to participate, you will be told whether you will be paid, how much you will be paid, how you will be paid (gift card, check, etc.), and when you will be paid (at each visit/session, at completion of study, etc.). Payment is not meant to convince you to participate, but to thank you for your time and to cover any costs you may have incurred by participating, such as for travel or taking time off work.
There is no cost to participate in health research or clinical studies. In addition, there may be reimbursement for your travel, parking, and time. However, if researchers meet with you at your regular doctor office visits, your standard co-pay may apply.
It is essential to be well-informed before you agree to participate in health research or a clinical study. Every study is going to have different benefits and risks associated with it. The following is a brief list of questions you may want to ask before agreeing to participate.
- What kind of study is this?
- Why are you conducting this study?
- Why would I make a good study participant?
- Where does the study take place (by phone, via mobile app, at a medical clinic)?
- What will I need to do (fill out a survey, donate biological samples such as blood or saliva, participate in a focus group, try a new medical treatment)?
- Does this study involve a new medication or a medical device? If so, are there any side effects?
- Is the treatment available outside of the study?
- Where will the results of the study be shared for me to learn about later?
Usually, these types of questions are answered in the informed consent document or study information sheets, but do not be afraid to ask if you still have questions.
Even if you consent to participate in a health research or clinical study, you always have the right to stop at any time.
All health research studies and clinical studies involve some degree of risk. For studies that only ask you to fill out a survey, the risks are minor, such as possibly asking you questions that could make you uncomfortable. For studies that ask you to take an experimental drug, the risks can be much greater, such as having negative side effects. The study coordinator will go over all the risks and benefits of a study with you before you enroll. These will also be explained through the informed consent process. Each person must think about the risks and benefits and decide for themselves if the study is something they want to be involved in. If you have concerns about possible risks, make sure you ask a member of the study team.
No, some simply involve taking a survey or taking pictures of your food. Any study that requests biological samples, like blood, is required to explain this in the informed consent document.
The time commitment depends on the type of study. Surveys may take 10-20 minutes, where focus groups may take 1-2 hours. Treatment studies could take months or years, but you may only be asked to come in for a visit once every few months. It all depends on what the study is looking at. The time commitment will be outlined in the informed consent, but you should ask the study team if this is a concern before agreeing to take part in the study.
All health research and clinical studies that involve human volunteers are reviewed by an Institutional Review Board (IRB). The IRB’s main concern is to make sure that volunteers are safe and that the study is fair and ethical. The IRB actively monitors each research study until the study is complete. The IRB must approve any changes to the study before they can take effect, and any new information about the risks of the study are required to be reported to the IRB by the researchers.
“My experience in three clinical trials has been phenomenal. Although not cured, my quality of life for the nearly four years since diagnosis has been excellent. The professionalism and compassion of my [physician], the nurses, and staff have been truly exceptional.”
“Research studies not only offer the potential for improved treatment to the individual clinical trial participant, but very importantly, provide the means for development of improved and safe therapies.”