NCI survey: Most people do not know much about clinical trials

Most people don't know much about clinical trials, according to surveys across all races and groups. Yet many members of the Hispanic community fear and distrust doctors, hospitals, and medical research. Part of this distrust may have come from the legacy of enforced sterilizations that Latinas experienced before World War II in Puerto Rico.

These views can prevent them from getting checked for diseases such as cervical cancer, which they develop at a higher rate than women of other racial/ethnic groups.  With regular Pap tests and pelvic examinations this disease can be largely prevented and cured.

And this distrust may also keep Hispanics from taking part in clinical trials. Clinical trials can represent a deeper involvement with a system that many Hispanics not only distrust but may not understand.

Getting Your Bearings

Clinical trials are research studies in which people help doctors find ways to improve health and cancer care. People volunteer to help test whether new treatments are safe and effective before doctors make them available to the general public. Many people who join clinical trials say it is because they want to contribute to the research effort to fight cancer.

The Hispanic population is the fastest-growing ethnic group in the United States.  It is made up of a mix of ethnic and racial heritages from more than 20 countries. And unless enough Hispanics join clinical trials, researchers may not be able to determine whether all Hispanic cancer patients, present and future, will benefit from the advances being tested.

There are other barriers besides fear that can keep members of the Hispanic community from taking part in clinical trials.

All of the information, forms and instructions can be overwhelming, and this can be especially true for members of the Hispanic community who do not speak English.  Fortunately, most places where trials are being conducted have Spanish-language forms and education aids available, as well as translators.

The Hispanic community is very diverse, but some beliefs permeate the culture. Resignation often follows a cancer diagnosis, driven by a belief in fatalism. Hispanic women may be uncomfortable receiving care from male providers. Fears of getting a placebo, or "sugar pill," or of being used as a "guinea pig" persist.

Lack of insurance can be a major barrier to Hispanics considering whether to join these studies. However, some costs are paid by the trial's sponsors, and additional costs to the patient in a trial are usually no greater than the cost of standard care. Where insurance does not cover the cost, participants may be able to make arrangements with the clinical trial staff.  

Many hospitals and cancer centers are working hard to make changes that make it easier for Hispanic patients to take part in clinical trials.  Bilingual patient navigators and translation services can help patients understand consent forms and other materials. Members of the billing office or social workers can help patients with cost concerns.  And patients who may have problems with transportation, childcare, and other family challenges can often find community programs that can help.