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Ways to Work with Hospitals, Medical Centers, and Universities
Work with Researchers and Health Care Professionals
Serve on an Institutional Review Board (IRB)
What You Can Do
Help researchers design and conduct clinical trial
recruitment efforts Find ways to get primary care doctors, oncologists, and
oncology nurses to understand local clinical trial resources and to
refer people to trials Find out how you can serve on a local institutional review
board (IRB)
Why?
To help increase access and accrual to cancer clinical trials
Introduction
Many public institutions recognize the importance of including
nonscientists in the clinical trial review process and are including
patients and advocates as members of advisory committees and
planning/oversight groups that have a focus on clinical trials.
People from outside the research community play an important role
in program planning and implementation, and help to set
Education and Outreach in Action
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A retired mail carrier helped her significant
other through cancer treatment. She read everything that
she got her hands on about chemotherapy and learned a lot
about cancer treatment.
Now that the cancer is in remission, she still logs
onto the National Cancer Institute's Web site for new
information. As a part of the local cancer support group,
she attended a local cancer conference. One of the
presenters discussed new medicine being studied in phase
3 trials, but mentioned in passing that the researchers
are having trouble getting patients to consider
participating in the trial.
During the "Q and A," she asked the presenter, "How
can patient groups help you get the word out about this
trial?" The group made a plan to meet with the
researchers to figure out how they could work
together.
Of the experience, the mail carrier says, "If I hadn't
made contact at that meeting, they would still be having
the same problems getting patients to consider
participating in this trial. Experts don't realize the
scope of patient organizations and all of the services we
have to assist them with their trials and any other
projects."
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"I work in a breast cancer screening program,"
said a nurse from a Midwest health department. "Some
women are really worried about getting breast
cancer-they've lost a sister, a mother, an aunt to breast
cancer. Once they've gotten a normal mammogram report, I
tell them that they need to take care of themselves by
getting annual mammograms and clinical breast exams, and
I train them how to do breast self exams. But, I also
tell them that they may want to think about participating
in a breast cancer prevention trial." The health
department works with local physicians, the local medical
center, and some churches to let community members know
about opportunities to participate in breast cancer
prevention trials.
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In addition to sponsoring community forums and information
sessions as outlined in other sections of this guide, many laypeople
have worked alongside researchers to advise them in their clinical
trial outreach and education efforts.
Points to keep in mind when assisting researchers with community
outreach include the following:
Community members who are known, trusted, and accountable
may be more effective and more believable to other community members
than a researcher. Community members can help advise researchers on ways to
present clinical trial information that complements the values people
in the community hold. Community members can help foster the development of
partnerships with organizations and the research institutions.
Tips to Find Out How You Can Help Researchers
Contact principal investigators or research nurses of local
institutions. To find out the kind of research being conducted in
your community:
Contact the research office of the institution. Use the NCI Research Portfolio to find out about research
going on in your community. The portfolio allows users to browse and
explore active NCI-supported research, including extramural and
intramural projects, by type of cancer or by type of cancer research.
Research projects (including treatment, prevention, and cancer
control studies) can also be sorted by research project title,
principal investigator, State, and institution. Visit
http://researchportfolio.cancer.gov.
Tips to Find Out How You Can Help Health Care
Professionals
Find ways to get primary care doctors, oncologists, and oncology
nurses to understand local clinical trial resources and to refer
people to trials:
Talk to your own primary care physician, oncologist and
nurse about resources available to them from the NCI, such as:
The PDQ clinical trials registry.
PDQ can be accessed by www.cancer.gov
and through 1-800-4-CANCER. The Cancer Information Service's Partnership Program. Through
this program, the Cancer Information Service reaches the medically
underserved, including minority groups and people with limited
access to health information and services, with cancer
information. The program can provide clinical trials training to
state and regional organizations working with these populations.
Call the Cancer Information Service at 1-800-4-CANCER or visit the
National Cancer Institute's Web site at www.cancer.gov/cis. The Cancer Trials Support Unit (CTSU). This is a pilot
project sponsored by the National Cancer Institute (NCI) that
supports a national network of physicians and patients to
participate in NCI-sponsored phase III cancer treatment trials.
For more information about joining, log on at www.ctsu.org
or call 1-888-823-5923. The NCI Research Portfolio. Find an oncologist who can present information on clinical
trials to primary care physicians and nurses in your community. Contact local chapters of the American Academy of Family
Physicians (www.aafp.org) and/or
the Oncology Nurses Society (www.ons.org)
to explore their knowledge of cancer clinical trials in your
community.
IRBs are made up of people who are qualified to evaluate new and
ongoing clinical trials on the basis of scientific, legal, and
ethical merit. The IRB determines whether the risks involved in a
study are reasonable with respect to the potential benefits. IRBs
also monitor the ongoing progress of the trial-from when it begins to
when it ends.
Federal regulations require that each IRB is made up of at least
five people; one member must be from outside the institution. IRBs
usually are made up of a mix of medical specialists and lay members
of the community. Many IRBs include members from diverse occupations
and backgrounds.
In most cases, IRBs are located where the study is to take place.
Most institutions that carry out clinical trials have their own
IRBs.
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Typical Questions Addressed by an IRB
Are the risks to participants minimized as much as
possible through sound research design and the use of
safety-focused procedures? Are the risks reasonable in relation to the
anticipated benefits and the importance of the knowledge
that may result? Are participants selected fairly? Is a plan in place for seeking and documenting
participants' informed consent? Is the informed consent document both legally and
ethically sound? Have provisions been made for monitoring the data
collected to ensure the safety of participants as the trial
progresses? Have provisions been made to protect the privacy
of participants and the confidentiality of data collected
during the study?
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To find out how you can serve on an IRB:
To learn about vacancies, contact administrators
(research or grant departments are good places to start) of local
hospitals, cancer centers, or universities. Some may have waiting
lists. Ask your doctor or nurse.
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To help you plan for work with hospitals, medical centers, and universities see the Plan for Action.
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