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Ways to Educate Others, One-on-One
Get Started--Circle of Connections with Individuals
Talk to Others--Tips
Help Others Understand How to Evaluate Research in the News
What You Can Do
Find opportunities to talk to others-neighbors,
friends, and coworkers-about clinical trials, common myths
surrounding clinical trials, and where to find more information on
clinical trials Help others understand how to evaluate research in the
news
Why?
Introduction
As someone who knows a lot about clinical trials, you will often
be given the opportunity to talk to individuals about their cancer,
cancer of a loved one, or being at high risk for cancer. One of the
best ways to educate other people is to talk informally about what
you are learning about clinical trials.
As you seek opportunities to speak to others, keep in mind that
it's important to be able to answer common questions about clinical
trials. But it's also important to admit when you don't know the
answers, and to seek other resources for information.
This section will guide you through some ideas to talk to
others
Education and Outreach in Action
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A high school teacher who is a cancer survivor
is finding ways to spread the word about clinical trials.
Because she is active in her church, she finds herself
talking to many people whose lives have been touched by
cancer. She says, "People call me the cancer lady, but I
don't care." She is often asked to talk to fellow church
members about her experience with cancer and her
treatment on a clinical trial.
She says, "I used to think that clinical trials
treated people like guinea pigs-a lot of folks do. I
think people need to know the facts about clinical
trials. No one likes to hear their own name associated
with the word 'cancer.' But, how many times does someone
hear about a co-worker, a friend, or a neighbor who was
just diagnosed with cancer? That's how I approach other
people. I tell them that it's important that cancer
patients talk to their doctor about all their options.
That's the best help that I can provide someone."
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Finding Opportunities to Talk to Others
You may be active within one specific organization or have
connections with many different community groups. As you think about
the importance of clinical trials, think about where and how you can
become a clinical trial resource to people you know. How can you help
other people learn about clinical trials?
In the circles below, write down the names of at least four people
with whom you feel you can discuss clinical trials. Think about these
people as you work through this section.
One way to provide support to others is to help those diagnosed
with cancer, and those at high risk for developing cancer, to learn
more about the option of participating in a clinical trial. Equally
important is explaining clinical trials to those who are not facing a
cancer diagnosis, but who are interested in why they are
important.
Here are some tips to get you started on this conversation; keep
in mind that conversations need only be a few minutes long:
Express empathy for the person's situation. Use active listening skills. Ask whether the person would like to hear some information about
cancer clinical trials. In your own words, talk about why clinical trials are
important.
If relevant:
Discuss clinical trials as an option for treatment and
prevention. Remember that clinical trials are not the right option
for everyone. Review some of the benefits and risks to participating in clinical
trials. Respond to common myths associated with clinical trials. Explain some key ways that participants' safety is protected in
clinical trials. Explain some of the barriers associated with clinical trials for
patients. Know how to answer common questions about clinical trials. But,
admit when you don't know the answers. Have resources available (such
as those in this series) and the Cancer Information Service's
1-800-4-CANCER. Be aware of cultural sensitivities around clinical trial issues.
(See General Strategies for Educating Diverse Populations.) Understand the local clinical trial resources in your
community.
People often hear about the results of clinical trials from overly
positive or overly negative media reports. These reports often
influence the way they think about clinical trials and can help to
reinforce common myths. When you find yourself talking to others
about clinical trials, it will be important for you to respond to
these reports in a thoughtful way. Here are some questions to
consider as you help others evaluate these types of media
reports.
Some of these questions will not be answered by a short article in
a newspaper. You may need to locate the original research article by
using PubMed or another medical library database.
Who wrote this article?
Any good news article should list the author,
his or her institution, and if the author is not a
reporter, his or her background. Reporters are trained to
be objective, but they often report on what seems
newsworthy and may miss key facts. Some institutions may
not list the author of an article, in which case the
institution itself should be considered the author.
Newspapers often use "wire reports," such as the
Associated Press (AP), and often include materials
excerpted directly from press releases. What is the basis of the information in the
article?
In addition to identifying who wrote the article
you are reading, the evidence that material is based on
should be provided. Medical facts and figures should have
references (such as an article in a medical journal or
the consensus of a meeting of experts reviewing research
evidence); anecdotal evidence, opinions, or advice should
be clearly set apart from information that is
"evidence-based" (that is, based on research results). Does the article say if the study involved people,
animals, or cells in the laboratory?
In early cancer research or preclinical testing,
scientists test promising new cancer treatments in the
laboratory and in animal models. This is done to find out
if the treatment has an anticancer effect and if it is
safely tolerated in animals. Only if a new drug proves
promising in the lab, does it move to testing in humans.
Clearly, preclincial research only suggests future
direction, and cannot be applied directly to all people
with a particular type of cancer. Does the article include information on the phases of the study
and number of participants?
Clinical research is generally conducted in
three different types of studies called phase 1, 2, and 3
studies, reflecting the order in which they take place.
Each phase of a study has a different goal and, although
they are often conducted separately they can be conducted
as part of the same study.
News articles may not mention the study phase.
However, if an article refers to an "early" study, it
generally refers to a phase 1 or 2 study. If an article
discusses different groups of patients getting different
types of treatment or different doses of a drug, or
mentions that a study was "randomized," it usually means
the study was a phase 3 study. Occasionally, phase 2
studies may be randomized. If the study includes a new agent or device, has it
been approved by FDA?
The Food and Drug Administration (FDA), an
agency of the U.S. Department of Health and Human
Services, must review all test results for new agents to
ensure that products are safe and effective for specific
uses.
FDA applies two key questions to each application for
drug approval:
Do the results of well-controlled studies
provide substantial evidence of effectiveness?
Do the results show the product is safe under
the conditions of use in the proposed labeling? (In this
context, "safe" means that potential benefits have been
determined to outweigh any risks.)
Only when FDA makes the approval does it allow the
drug to be "labeled" for a specific use. This label
includes information on what kinds of people should be
given the drug, the dosage of the drug, and information
on safety and adverse effects. It is only at this time
that the new drug can be given to people outside of a
clinical trial. What were the characteristics of the people who
participated in the study?
Sometimes, studies are done only in specific
groups of people-for example, people in a particular age
group, or those whose cancer is at a particular stage.
This may mean that the study results may not apply to
those who are not members of these specific groups. Does the article discuss the benefits and risks for
those participating in the study in a balanced way?
Just as there are potential side effects to all medications, there are benefits and risks to all clinical trials. The article should fully describe the known benefits and risks, as well as note that there may be side effects or risks that are unknown. If the article appears to be one-sided or overtly positive, you may be justified in having some skepticism about the author's motives. Who funded the study?
Studies can be funded from many sources. The
most common sources in the United States are the Federal
Government, universities, private foundations, or
industry (such as pharmaceutical companies or companies
making a device that is being tested). If a researcher
has received funding from a source, such as the Federal
Government, that uses a peer review process for
evaluating and awarding research funds, the research
findings will be more credible and less subject to bias
than if the sponsor has a vested interest in the results. Who conducted the study?
It is important that research studies have
scientific review and ongoing oversight. Studies that
have been through this level of scrutiny are more likely
to produce high quality results than those that have not
been reviewed. Were the study results "peer reviewed" or just
announced at a meeting or through a press release?
If the news article was based on a published
article in a peer-reviewed journal, it means that other
experts have examined and critiqued the researchers'
methods and findings. |
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