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Patient Perspectives: Deciding on Participating in a Clinical Trial

  • March 9, 2018

  • By Marie Recine, Patient Advocate, Medical Writer and Speaker at the Patients as Partners Conference

    To me, clinical trials are an important treatment option at all stages of a disease. The benefits are numerous. Patients who enroll in clinical trials receive close monitoring and have the opportunity to be among the first to receive the newest drugs or drug combinations in development and to advance clinical research.

    Unfortunately, many patients are not informed of clinical trials as an option, or they may only hear about clinical trials after all other options have been exhausted. Another important barrier to clinical trial participation is patient misconception about clinical trials in general.

    Even when patients are aware of clinical trials, whether or not to participate is not an easy decision to make. Shared decision-making between patients and their physicians is critical. With shared decision-making, both parties work together to balance a physician’s experience and expertise with a patient’s preferences and values.

    In my experience, some of the top considerations raised by patients when deciding on participating in a study include:

    • The potential risks involved with the investigational treatment/study
    • The benefits and risks of the other standard treatment options available to them
    • The time commitment—not only the number of study visits, but whether their time will be utilized wisely at each visit
    • Whether the study has a placebo or active control, and if a placebo control, what proportion of patients will be in the placebo arm (a friend declined to participate in a placebo-controlled trial for a new multiple sclerosis drug because she felt she could not risk the chance of being off medication for the duration of the study and experiencing a relapse)
    • Whether there are results of any earlier studies of the treatment being investigated
    • Whether participation in the study will limit their future treatment options

    The Role of Advocacy Groups

    Advocacy groups can play a key role in increasing the awareness of the need for clinical trial participation among healthcare professionals and encourage their consideration of clinical trials as a treatment option for their patients. They can also help support patients while deciding whether or not to participate in a clinical trial. As knowledge is a key component of patient-clinician decision-making, providing information to help facilitate these decisions is vital.

    Below are suggestions for providing information, which can be both general to clinical trials, as well as more tailored to a specific condition.

    • Start with the basics

    Provide easy-to-understand information on the nuts and bolts of clinical trials, which can help dispel any myths or misconceptions patients may have about clinical trial participation.

    • Provide suggested questions patients might ask to help their decision-making

    These may include some basic questions to ascertain patient goals and expectations, but should focus on questions about the study design and goals, the possible risks and benefits, participation commitments and care received, and cost and logistics issues.

    • Provide a decision aid

    When patients are provided decision aids to help them make treatment choices, they are more knowledgeable and satisfied with their care. Decision aids can be presented in many forms, including interactive tools, videos, and educational literature. With a clinical trial decision aid, patients can learn more about clinical trial participation, balancing the potential benefits and risks, and helping them prepare for conversations with their doctor.

    • Share patient stories

    Presenting patient stories helps to put a human face on clinical trial participation. As patients often request to speak to others who have participated in a trial, having access to speak to other patients in the study or patient volunteers who have such experience is always welcomed.

    Ms Recine is speaking at the Patients as Partners conference on March 15-16, 2018 at the Rittenhouse in Philadelphia. For more information, visit