California Initiative to Advance Precision Medicine Addressing the Barriers that Lead to Underrepresentation in Clinical Trials
The types of questions, support structures, and rights to ask questions and get answers about the research a patient participates in.
Know the Details of the Study
- Know the purpose and design of the trial, how long the research will last, and any possible outcomes of the study.
- Understand your diagnosis fully and be prepared for any new or experimental drugs, treatments, or procedures.
- Inquire about reimbursement for costs pertaining to the study.
- Know who has access to your data and how it will be kept confidential and secure.
- Refuse participation for any reason, refuse treatment, and withdraw your consent at any time.
- Ask all the questions you want before deciding to participate in the study.
Patient Support
- Receive informed consent information in cultural and linguistically appropriate ways.
- Involve your caregiver and primary care physician to advocate for you and help the researchers make important decisions about the treatments under investigation.
- Be informed of any possible risks, benefits, side effects or discomforts caused by the study.
- For researchers to disclose all information about alternative treatment options and their prognosis to you before participating.
- Agree to a continued access plan prior to the start of the clinical trial should it result in safe and effective treatment for your condition.
Questions to Ask or Consider
- Why do researchers believe the intervention being tested might be effective? Why might it not be effective? Has it been tested before?
- Will I be paid to participate in the study? Are there any reimbursement opportunities?
- What are the possible interventions that I might receive during the trial and what are the potential risks that may happen?
- Will I be allowed to continue receiving treatment after the trial ends?
- Will I be paid to participate in the study? Are there any reimbursement opportunities?
- How long will treatment take to complete the study?
For More Information
Special thanks to Policy Fellow Bridgette Smith for assembling information for the Equitable Consent webpages.