Being a Partner in Research: Ways to Take Part
Medical discovery is a step-by-step process to learn about health and to prevent and treat disease. Research has led to important discoveries such as:
- New drugs that work to treat cancer, diabetes, and other conditions
- Tests including ultrasound and x-ray that help medical professionals give you better care
- Vaccines to prevent disease
- Ways to stop smoking
Applying Discoveries to Real Life
One of the most important parts of the process is to apply knowledge learned through basic science research to real-life settings. But the only way to do this is through research studies with people. By taking part as a research volunteer, you can help researchers understand the whole picture of health and disease and improve health for individuals, families and communities.
Diversity Makes for Better Results
Research has shown that health factors are not the same in all populations. Diversity of research volunteers is the most important way to be sure that studies find information that is effective for everyone. Examples include:
- Symptoms of heart disease in women, differ from those in men.
- African American men are more likely to develop high blood pressure at an earlier age
- Life circumstances can be very important, too. Things that might work well in a more controlled office setting, might work differently with the day-to-day realities that occur in our lives.
Research studies can test for all of these things. By taking part, you can help find the best ways to provide health care for people from all walks of life.
Not All Research is Taking Drugs
There are many ways you can be involved. These include everything from taking a paper and pencil survey to being a part of the research design team in community-based participatory research. To learn about those examples and everything in between see Clinical Research: Studies with People.
Find a Study
You can find research studies in a number of ways including your doctor’s office, a medical university, or online. Studies vary in the time they will take and whether they are done in a medical or community setting; you can choose the study that works for you. When you search, be sure that you consider the geographic area. The following link will get you started: Search for Research Studies.
If you are interested in taking part in a research study, here are some things to think about:
- Ask questions.
- Know what is expected of you.
- Remember, it is your decision through the whole process.
- Learn as much as you can.
- Know the pros and cons.
- Taking part in research is voluntary.
- Research is not the same as treatment.
- A research study may or may not help you personally.
- In the future, the results could help others who have a health problem.
Questions to ask:
- What exactly will happen to me in the research?
- The research staff may ask you to explain the study back to them. This is the teach back concept, and it helps to ensure that you understand the study.
- Will there be any unpleasant side effects?
- Will the research help me personally?
- What other options do I have?
- Can I leave the study at any time?
- Will it cost me?
- How much time is involved?
Helpful Research Terms
Clinical research: a type of research that involves a particular person or group of people
Clinical trial: a particular type of clinical research that tests whether a new medicine or device is safe and effective
Consent form: One part of the informed consent process (see “informed consent”). A consent form is a document that describes and explains the parts of the study. Each form has at least 8 parts. The parts will cover what the study is about, who can join, what you will be asked to do, any risks or benefits, any costs, any inconvenience, what your information will be used for, and that your taking part is voluntary. After all questions have been answered and the volunteer agrees, it is signed by the volunteer. By choosing to sign the consent form, a person shows that s/he understands the study and is willing to take part.
- Purpose – why the research is being done
- Procedures – what the study involves, including how long the study will take
- Risks – what could happen if you join a study
- Benefits – what you might get out of joining
- Alternatives – what your other options are
- Confidentiality – data you provide is not shared with anyone that you have not agreed can see it
- Cost or compensation – any money you might have to pay or you might be paid
- Questions – names and numbers of the people you can call if you have questions or problems.
- Voluntary – it’s up to you – it’s your choice
Data: The information that researchers get and look at
Device: A piece of equipment made for a particular purpose; especially a mechanical or electrical one. An example would be a pacemaker.
Eligibility: A process of finding out whether a volunteer is a good fit or match for a study.
FDA (Food and Drug Administration): A government agency that monitors and approves drugs and devices before they can be used in the general public; one of the “referees.”
Informed consent: A process that involves talking with a study team about why they’re doing the study, what you will have to do while taking part in a research study, how much time it will take, whether you will be paid , whom to contact if you have questions – everything you need to know about volunteering. Part of the informed consent process includes a consent form (see “consent form”).
Investigator: A professional, usually a doctor, but may also be a nurse, pharmacist or other health care professional; one of the “coaches.”
IRB (Institutional Review Board): A special group of professionals who look over research studies to protect the safety of study participants; one of the “referees.”
Observations: Looking at and learning why things are the way they are.
Participant: A person taking part in a study. Also called a research volunteer or research subject; one of the “players.”
Protocol: The study plan; the “play book.”
Recruitment: Finding and getting people to join a study.
Research Subject: A person taking part in a study. Also called a participant or research volunteer; one of the “players.”
Research Volunteer: A person taking part in a study. Also called a participant or research subject; one of the “players.”
Retention: Refers to the completion of follow-up visits and procedures involved in the study; staying in the study until it is completed.
Sample: A small set of a larger group.
Standard Treatment: The treatment we know works for most people and that usually happens at the doctor’s office or hospital; part of usual care (see “usual care”).
Surveys: The use of written or verbal questions to gather information about people’s thoughts and behaviors.
Usual Care: What you normally get at the doctor’s office; includes preventative health care, routine screenings, and standard treatment (see “standard treatment”).
This article includes information from a brochure available from the Office for Human Research Protections.
- What is a Clinical Trial?
- Community-Based Participatory Research
- Participating in Research – You Can be a Part of the Answer – video
For more information:
Go to the Research Center health topic.