Behavioral Research: Should you participate?

What is behavioral research?
Changes in behavior are typical of epilepsy and many other medical and neurological conditions. These changes can be linked to a number of factors including biological causes, the effects of treatment, and the social and psychological consequences of having a chronic illness. Science has shown that the best way to understand these factors is to study them in a systematic way. This is called behavioral research. It is very important in helping doctors to understand and effectively treat people with epilepsy.

How is behavioral research performed?
Studies of behavior often involve direct contact with patients. To acquire the data they need, researchers may ask you to participate in structured interviews, to complete questionnaires, or to take part in behavioral tests.

A lot of behavioral research is performed to develop and test new ways of measuring behavioral and psychiatric conditions, because they can be so difficult to detect and quantify. The researchers may spend years devising a new test or questionnaire, trying to come up with an appropriate set of questions and standardizing the methods for scoring them. The test then needs to be tried out on patients ("piloted"). Finally, the new test is "validated"—assessed to determine if it is indeed measuring what it is supposed to measure.

Does behavioral research involve risks?
Behavioral research will be less risky for you than most other types of research studies. You won't experience any serious side effects, for instance. You may experience fatigue, frustration, or a feeling that you could be disclosing too much information. You should rest assured that the researchers and institutions are very interested in protecting your confidentiality. They know that it is very important that you have confidence in them and in the honesty of your relationship.

What will I get out of it?
You may rightly ask, "What will I get out of participating in behavioral research?" Depending on the study and your circumstances, there are several possible answers:

• Some studies pay money directly, to compensate you for your time.
• Some studies pay for travel expenses. You could use the free trip to schedule appointments with other doctors or to do other things in the city after the study session has ended.
• The extra information obtained about you in behavioral studies—information that would not have been obtained in regular practice—might be important in helping your doctors.
• If good care in the past has helped you to overcome a difficult situation, you may find that participating in research studies is a way of "giving back" to others who are currently in the same situation you faced years ago.
• You may want to enroll in research studies just because it can be fun. Some people like the challenges and stimulation introduced by many of the tests and questionnaires. You might find that it's a good way to get out of the house and spend some quality time.

In summary, research can further our understanding of conditions such as epilepsy. And because problems with thinking and behavior can be some of the most troublesome aspects of epilepsy, behavioral research is extremely important. Although some of the methods and procedures used in this research might seem unusual on the surface, you can be confident that much thought and effort have gone into how the knowledge gained will help to improve medical care and shed light on important unanswered problems.