Promoting Participation in Clinical Trials

There continues to be misinformation about clinical trials, how they work, why they are important, and the need for participation.

As oncology navigators, we may need to dispel myths for patients from cultural backgrounds that have a distrust in clinical trials. Some people may believe that participating in clinical trials means being blindly experimented on, not knowing the rigorous tests and studies the product has undergone to determine efficacy and safety.

There is also an assumption that clinical trials only relate to cancer drugs. Many people can be candidates in clinical trials that involve, for example, giving a tube of blood for studies. Patient family members that are considered high risk for the cancer their family member was diagnosed with can participate in clinical trials regarding that cancer. Trials like these could be related to giving blood, having a special type of scan or test, or being seen periodically for examination.

We need to educate patients on what clinical trials are and are not. Without participation in clinical trials, there will be no new therapies developed to save more lives, there will be no new tests to detect cancer earlier than it can be today, and there will be no methods developed to prevent cancer from happening in the first place.

Here are some advantages to having a patient participate in clinical trials:

• The clinical trial is as good, if not better, than standard of care. They will not be getting less than standard of care but might be receiving what ends up becoming the new standard of care.
• They are followed VERY closely, frankly more closely than they would be if they were not participating in a study.
• They are participating in history. The test, scan, treatment, and lab research being done may very well become part of their own legacy, particularly if it is determined that the clinical trial results confirm that what was tested becomes the new standards of care.
• Many patients like the idea of paying it forward for future generations, including their own.

Not participating in a clinical trial doesn’t result in patients being treated differently or without compassion and understanding. However, it is important for us to understand the reasoning for choosing to not participate so that we can learn from this and figure out ways to overcome it in the future.

An example of a barrier to clinical trials is the time they take. Patients will commonly need to be seen more frequently because they will be getting extra tests, blood draws, or examinations. If the patient cannot miss time from work for any reason, such as finances, then we need to change expectations and make it convenient for the patient to come. For instance, you can schedule their blood draw after work or in the early morning before work. We should never make it onerous for someone to participate in a clinical trial.

If a patient is on the fence, you can give them the opportunity to talk with others who are participating in the study or have participated in a similar type of study in the past.

Personally, I provided a letter to my patients as they checked in for their first appointment that says who I am, that I have participated in clinical trials and continue to do so as a survivor, and that it is likely someone will talk with them during their visit about innovative tests and treatments we are studying with the goal of finding new treatments, earlier diagnosis, or even prevention of cancer.

Keep track of how many patients YOU recruit to participate in clinical trials and include this information in your performance metrics reporting.

Be sure to give the patient the final results of the study. After all, without them this research wouldn’t have happened.