What is Health Research?

Health research (which refers to clinical trials and studies) is the way we learn new and better ways to help people be healthier. Every trial or study is a collaboration between members of the community (you), doctors, and researchers. Research studies can test new ideas to see if they help treat or prevent disease. Research helps us learn what does and does not work.

You may hear a lot about how important your participation is in health research. When people volunteer, they help support important research that leads to better medical care. Health research and your involvement in it play a crucial role in improving the health of current and future generations.

Health research is a broad term that includes many different types of studies. Not all studies involve new treatments for disease.

• Intervention studies look at specific medications, procedures, and devices to see if they are more effective at treating a disease or medical condition. Example: A study of a medication to treat cancer
• Prevention studies help determine how we can better prevent a certain disease or condition from occurring in healthy people. Example: A vaccine study
• Diagnostic and screening studies search for better ways to detect and diagnose disease. Example: A study to diagnose Alzheimer’s using a blood sample
• Behavioral research seeks to identify how certain behaviors are related to a variety of diseases and how these behaviors can be modified. Example: Determining if yoga helps cancer survivors
• Quality of life studies look for ways to help those with chronic or incurable diseases. Example: Treating depression in people with chronic pain
• Observational studies follow participants over a period of time - monitoring their health over the course of months or years - without changing their treatment. Example: Studies that survey patients about their health.

All health research at the University of Rochester Medical Center has important ethical and legal safeguards in place to ensure your safety.

• Extensive professional review.
  • All health research at UR is reviewed by panels of doctors, researchers, and community members to help protect the health and safety of participants. If, for any reason at any time, the doctor or researcher feels a study is not in a participant's best interest, they will withdraw that person from the study.
• Widespread community considerations.
  • We also work with Community Advisory Boards to help us understand priorities regarding research and how it impacts the community.
• Strict federal regulations.
  • In addition to the above-listed safeguards, most health research is federally regulated. Numerous laws and guidelines help protect the safety and privacy of participants in health research. For example, Institutional Review Boards (IRB) must approve and monitor every clinical trial. The IRB is highly concerned with protecting the rights of study participants and ethics. Researchers have to do a lot of reporting so their findings can be monitored, but volunteer names are not mentioned in these reports; your identity remains secret and protected.

Even with these safeguards, some people have understandable concerns about the safety of trials and studies.  Before joining a research study, you have the opportunity to discuss with the research team any of your questions and concerns.

There are benefits and risks involved in any medical research, and it is important for you to understand them thoroughly and decide what is right for you. Be sure to talk about any risks, discomfort, or possible side effects with your doctor and the researchers involved.

The National Institutes of Health can provide more information about research. CISCRP educates and empowers patients and the public to be viewed and engaged as partners in clinical research.

Think for a moment about everything you do to stay healthy. It may be leading a certain lifestyle to lower your risk of developing heart disease or taking medication to help a medical condition. What might not come to mind is how you and your family might benefit from health research. Your child's vaccinations, your mom's migraine medication, your partner's physical therapy, or your brother's blood transfusion - none of these would be available if health research didn't prove that they were safe and effective.

Becoming involved in health research is also a way to participate in the very latest approaches in treatment and prevention for a particular challenge you may be facing, such as cancer, diabetes, heart disease, depression, or obesity. While there are no guarantees, participating in a study may be the only way to gain possible access to these new treatments until they are approved for public use.

For many reasons, medicines and treatments don’t always work the same for everyone. Symptoms of some conditions can also appear differently from person to person, which can affect how a doctor diagnoses and treats an illness. That’s why it’s important for people from all backgrounds and communities to take part in health research—so that everyone can benefit from what we learn.

Even when health research doesn't immediately identify a better approach, it inspires new ideas for further study. Each and every study brings all of us closer to a healthier way of living.

You've already taken the first step by learning more about health research happening right here at the University of Rochester. When you're ready, look at studies that are currently enrolling, and see if there's one that interests you.

Talking to your doctor is another way to get involved. Your doctor knows you and your health history and can provide good advice on whether participating in health research is a good fit for you. Your doctor may also be able to help you determine what studies are available for a specific disease or condition.

If you do not see a clinical trial or study of interest, you have a couple of options.

The UR Medicine Volunteer Registry is an easy, convenient way to find out about new studies that would be a good match for you. Anyone can join this free service and it only takes a few minutes! If you change your mind, you can easily remove your name at any time.

All you have to do is fill out the registration page, so that we can let you know about future studies. When you register, you can be specific about the types of studies that appeal to you most, such as high blood pressure, cancer, menopause, or even being a healthy volunteer. This will allow us to send you a more customized list of studies. You can join the registry by following this link to the UR Volunteer Registry.

You can also contact our Call Center at (585) 275-2107 or by email.

In addition, UR researchers recruit potential research volunteers from a national recruitment registry called ResearchMatch.org.

Yes. You may withdraw from a clinical trial or study at any time, for any reason. Your participation is very valuable to us, but it is even more important that you make decisions that are right for you. All our researchers will support your decision if you don’t continue in a study.

It's also important to understand that we can choose to end your participation as well, if we decide that the study is not in your best interest, if you don't follow the rules of the study, or if the study is discontinued. If we ever have to end your participation, we'll make sure you understand the reasons why.

Your privacy and the privacy of your medical records matter to you, and they matter to us, too. You can read and download more about UR privacy topics as they relate to your internet use and medical information.

Your confidentiality will also be protected. When you participate in or request more information about a particular study, your name and other information that identifies you will not be sent outside of UR Medicine unless we have your written permission or the law requires it. If you have any questions or concerns about your privacy, please call us at (585) 275-1020 or ask the study coordinator for more information.

No. Health research needs the help of healthy volunteers too! In some studies, researchers need to compare healthy volunteers with people who have a specific disease or condition. In the earliest phases of health research, new drugs and treatments are tested on healthy volunteers first. Either way, your efforts will help treat and prevent disease for those at risk or who are already suffering.

There are two types of healthy volunteers. The first type is a person who has no known medical conditions. The second is someone who may have a medical condition, but one that is unrelated to the clinical trial or study in question. For example, let's say you have asthma, but are interested in being part of a study on diabetes. If you don't have diabetes, you may be considered a healthy volunteer for that particular study.

Every health research study has different time requirements. Some might involve very little of your time, while others may require more frequent visits. Occasionally, a long-term study will want to check in with you over the course of several years.

The descriptions of our recruiting studies will have information about the time requirements of each. If you need more details, feel free to contact the study coordinator or lead researcher listed.

In some cases, participants receive  payment for their involvement in a study or reimbursement to cover the cost of transportation and any other out-of-pocket expenses. The amount and method of payment vary from study to study. The University of Rochester uses a system of payment for research participants, called Participant Payments.

Usually, the care you receive through health research, such as doctor visits, medications, tests, and procedures, is provided at no cost to you. However, this varies from study to study. Be sure to ask your research coordinator for full details.