The terms medical research and clinical trials often conjure up negative images for patients and caregivers.
Get Involved with PATIENTS
The PATIENTS Program is committed
to building the bridge between medical
researchers, health care providers,
and the patients they serve to
create trust and transparency
that leads to research, treatments,
and policies that improve health
outcomes in underserved communities.
People recall stories of doctors treating patients like “lab rats” during studies, or participants in need of treatment who only receive placebos (treatments with no known active ingredients). And, while there have been documented cases of such abuses, medical research continues to be a key component in the development of the medicines and treatment we rely on today, and is especially important for women and minorities who may not receive the specific treatments and interventions they need because they aren’t represented in the research data.
Ensuring that Medical Research Improves Healthcare for Everyone
Currently, minorities account for fewer than 10 percent of patients enrolled in clinical trials, according to the National Institutes of Health (NIH) National Institute on Minority Health and Health Disparities. But with more patient knowledge, along with increased transparency and trust between researchers and community members, we can begin to change the face of medical research and make it more valuable for everyone.
Dispel the Myths. Get the Facts.
Please click on each myth listed below to learn the real facts behind it.
Myth: Medical research is dangerous and experimental. I’d be gambling with my health if I signed up.
Fact: Many measures are in place to protect the safety of people who take part in studies—from careful study design to oversight by institutional review boards and periodic monitoring of study data by independent experts. Research study participants receive regular and careful medical attention and are closely observed for safety concerns. During the study, researchers must inform you of any new risks, benefits, or side effects they discover. The National Institutes of Health (NIH) provides several designations for the various types of clinical trials.
- Natural history studies: provide valuable information about how disease and health progress.
- Prevention trials: look for better ways to prevent a disease in people who have never had the disease or to prevent the disease from returning. Better approaches may include medicines, vaccines, or lifestyle changes, among other things.
- Screening trials: test the best way to detect certain diseases or health conditions. Diagnostic trials determine better tests or procedures for diagnosing a particular disease or condition.
- Treatment trials: test new treatments, new combinations of drugs, or new approaches to surgery or radiation therapy.
- Quality of life trials (or supportive care trials): explore and measure ways to improve the comfort and quality of life of people with a chronic illness.
Fact: Not at all medical research or clinical trials include physical testing. Many studies involve surveys, personal interviews, and focus groups. They are research tools for advancing medical knowledge, medical devices, patient care, and policy development. They produce the best data available for health care decision making. Clinical research can also be a powerful platform for patients and caregivers to influence the way researchers and law makers approach treatment, care, and policies.
Fact: Before participating, researchers must obtain proof of your informed consent. This means that you have received full disclosure of the nature of the research and your involvement, that you adequately comprehend the information provided, and you confirm voluntary participation. Researchers must make every effort to be sure that you understand the purpose, benefits, risks, and other options of the test or treatment.
Fact: Consistent transparency leads to trust, and the PATIENTS Program is dedicated to earning the trust of the communities we engage. Creating transparency is a key element of how the PATIENTS Program serves both the community and the researchers we partner with. Before a study begins, we will explain what we’re going to do, how were going to do it, and how we will follow up with you after the trial.
Learn More About Getting Involved
The PATIENTS Program at the University of Maryland School of Pharmacy is committed to building the bridge between medical researchers, health care providers, and the patients they serve to create trust and transparency that leads to research, treatments, and policies that improve health outcomes in underserved communities.