As with adults, young people may benefit from participating in clinical trials. Some youth may not be open to discussion of clinical trials in their initial visits, but some patients may have had experience with research and may want to engage in this discussion. In this case, the clinician should be prepared to assess the youth's interest and discuss general concepts about clinical trials. For example, at the end of a visit, a doctor could assess a patient's familiarity with and interest in research, and start the dialogue by providing an introduction about research:
Doctor: This conversation has been very helpful. Let me briefly share with you another type of information that you may find of interest and we can discuss at your next visit.
In this city/county, we have access to studies that help us answer specific health questions for youth who are living with HIV. For example, there are studies designed to find ways to help teens stay healthy or take their medications. There are also studies to help us gain a better understanding of how (the bodies of) young people respond to certain HIV medications. These studies are called clinical trials, and they may take from few to several visits. Some of those studies are designed to give us more information about how people handle HIV medications, the best doses to use, the best ways to take them, how these medicines relate to other medicines, how teens avoid infections, etc. The participation in these studies is voluntary and the person can decide to stop being part of the study at any time. Researchers closely check for any symptoms or concerns related to being part of the study and are available to respond to any questions. I will give you some information about it (Title IV brochure) and next time, if you are interested, we can discuss it further.
The perception of patient and family regarding research is important when talking to a youth about research. For immigrant youth and families, it is important to assess their familiarity and experience with the health care system and with clinical trials and research. In addition, the provider should be able to offer information about cultural competency in clinical trials. For example, is the informed consent language for a specific clinical trial written in the patient's native language? Are there any providers who can communicate in the patient's language?