Joining a clinical trial: Helpful hints for discussions with loved ones

Individuals living with an illness are likely well-versed in the art of discussing difficult topics with their family and friends. However, for those who are considering taking part in a clinical trial, there may be extra questions to consider when sharing their intent to enroll.

While most family and friends will offer support, anticipating their questions and preparing talking points can help facilitate productive conversations about volunteering for research studies. Read on for some helpful tips.

Tips for discussing clinical trials with loved ones

Choose the right moment. To ensure there is space for discussion and questions, choosing the right time and place to have the conversation is an important first step. A time when everyone is present and open to chatting can set the right tone.

Know the audience. Though the information shared in the discussion will ultimately be the same, tailoring the message can help everyone understand the information about what participation means. Whether for different ages or different audiences, not everyone has the same level of health literacy, so it is important to present clinical trial information accordingly.

Share the reasons for participating. People have many reasons for being interested in clinical trial participation, and sharing these can help loved ones understand the appeal. Some common benefits include playing an active role in treatment, gaining access to potential new therapies, and helping to accelerate medical research, but volunteers often have personal connections as well.

Be frank about potential risks. Ultimately, clinical trials are evaluating treatments that have not yet been approved, so it's understandable that your loved ones will have legitimate concerns. The most common concerns involve potential side effects and treatments not working as anticipated — however, participants are free to withdraw from a trial at any time, for any reason.

Prepare answers for typical questions. Normally, loved ones will have questions about clinical trial participation, and being ready to answer these can be helpful. A few that commonly arise include:

• What is a clinical trial?
• How will we know if it’s working?
• Will your doctor still take care of you?
• Does this mean more doctor’s appointments?
• How much does this cost?
• What if you get a placebo?

The Cancer Support Community has published an excellent e-book, Frankly Speaking About Cancer Clinical Trials, that outlines answers to these questions, even for individuals who do not have cancer. There are also other incredible resources available online that can provide helpful context about why clinical trials are helpful and the importance of volunteering for them.

Talking with loved ones about taking part in a research study may feel like a daunting task, but it can be a helpful way to involve those you care about in the decision-making process. Being well-prepared for this discussion can help it go smoothly and help loved ones understand the benefits of enrolling in research. If you’re ready to take the first step towards taking part in a clinical trial, start searching below: