— Chris, 47, brother of cancer survivor
Taking part in cancer research
Research is the key to improving prevention, detection, and treatment for cancer. The treatments and interventions that will be used in the future are being developed based on the people who take part in research studies today. The more people join, the sooner we may find more options for cancer control.
Cancer research takes place at hospitals, universities, government facilities, private companies, and in the community. There are different ways you can get involved, such as spreading the word about the benefits of research, taking part in it, encouraging others to do so, and helping to influence how research is done.
Joining a research study
Clinical trials are research studies that involve people. These studies help doctors find ways to improve cancer care. Each trial tries to answer scientific questions and find better ways to prevent, diagnose, or treat cancer.
You don’t have to have cancer to take part in a trial. Cancer treatment trials test whether a new drug or procedure is effective. But if you’re a cancer survivor, or a friend or family member of someone affected by cancer, there are many options to try. For example, there are:
- Clinical trials that focus on cancer prevention, cancer screening, or health behavior.
- Research studies that ask survivors and their families to fill out surveys or take part in interviews. These studies may focus on understanding more about:
- The things people do or are exposed to that may affect their health
- How cancer affected their lives
- The medical costs of cancer and its treatment
Taking part in a research study—once you learn all you should about it—may be an important way to give to others and, perhaps, yourself as well. You can find more information below.
To learn more about clinical trials:
— Juana, 40, lost her son to cancer
To find clinical trials that are right for you, contact the National Cancer Institute (NCI) at 1-800-4-CANCER, or go to: http://www.cancer.gov/clinicaltrials.
For example, you can:
- Learn more about how clinical trials have helped find better treatments for people with cancer.
- Find out how you can teach others about participating in these studies.
- Find out where clinical trials are taking place in your area.
- Talk to your doctor about clinical trials in your area. Some of these studies may also be listed in your local newspaper.
Having a voice in cancer research funding
Before designing a study, scientists and health care experts need to decide what topics to research, how the research will be done, and how it will be funded. And it’s not just doctors and scientists in lab coats who think about these issues.
People who have had cancer and others who are concerned about the disease are starting to have a voice in how research is funded. Often called consumer or patient advocates, they bring a vital point of view to the research process. They can explain what is really important to people who have cancer. Patient advocates also help scientists know what it’s like for patients to take part in cancer research.
When deciding what projects to fund, whether sponsored by a private organization, a state government, or the federal government, cancer research programs must review applications to look for the ones that show the most promise. For example:
- Many foundations raise money for cancer research, education, and outreach programs and then award funds to projects they feel are worthy.
- Many states, as well as the federal government, award funds to scientists for cancer research.
Some of these programs invite people to join committees that help decide which research gets funded. These advocates can bring a community perspective to such important decisions. By serving on these committees, reviewers help gather support for:
- New research studies that will benefit patients sooner and more effectively
- Improved medical care
- Improved quality of life for patients, survivors, and their families
There are a number of different programs that seek advocate input into what research gets funded. See the Resources list for more information.
Joining an institutional review board
— Howard, 68, cancer survivor
Another way you can get involved in research is by joining an institutional review board (IRB) at your local hospital, cancer center, or university. An IRB is made up of doctors, nurses, and people from the community. Its job is to review research studies and make sure they are run in a manner that is safe and fair. IRB members also look at informed consent documents and ensure that they are easy to understand. They also verify that they contain the information people should know about the study.
To learn more about having a voice in cancer research:
- Contact the research office at your local hospital, university, or cancer center. Ask to speak with the researchers to learn more about their work.
- Learn about research in your community by visiting the NCI Funded Research Portfolio Web site at: http://fundedresearch.cancer.gov. You can search this site by state, institution, or name of researcher.
- Contact your state’s health department and ask about the cancer research programs it funds. Find out which studies are looking for members of the public to get involved in some way.
- Contact the cancer organizations listed in the Resources section to find out the ways they involve people affected by cancer.
- To find local cancer programs, look on the Internet or in your telephone book under “Departments of Health” or “Health Departments.”
- Learn about the private foundations in your area that fund cancer research, and show them the value of a patient perspective. Ask them if they accept advocate input.