The Toolkit for Clinical Trial Participants and Community Members provides information on clinical trials to help individuals decide if they would like to take part in a clinical trial. The information is delivered using short videos, infographics, interactive quizzes, and short articles. Some of the Toolkit topics include a description of a clinical trial, reasons for participating in a clinical trial, the process of informed consent, and the risks and benefits of participation.
The Toolkit also provides additional health information in short, easy to understand formats that can assist individuals in their health journey. Some of the topics included in this section of the Toolkit include navigating a hospital stay, stroke reduction strategies, how to communicate with a doctor, and preventing hospital billing and insurance problems.
Stage(s) of Research Process:
- Study Conduct: This Toolkit is designed to help individuals decide if participating in a clinical trial is right for them. Therefore, this Toolkit is meant to be used during study recruitment to improve the informed consent process by providing additional, easy-to-understand information about clinical trial participation.
Who Might Benefit:
- Patients, Caregivers, or Individuals
- That are thinking about participating in a clinical trial can use the Toolkit to better understand what a clinical trial is and why their participation matters.
- That might participate in a clinical trial can use the Toolkit to understand how a clinical trial may impact their life.
- May find the information about general health care concerns useful when navigating hospital stays, health insurance issues, or communications with their doctor.
- Researchers
- Can use this Toolkit during participant recruitment by providing links to the Toolkit online or printing out the relevant infographics for participants.
- Interested in equitably recruiting female and racial and ethnic minority populations may find this Toolkit useful as it was designed to improve the representation of these groups on clinical trials.
Key Takeaways and Examples in Practice:
- Providing individuals with information on how their participation in a clinical trial can improve medicine, give back to their community, or help others in the future can increase recruitment.
- The Toolkit provides easy-to-understand materials that help patients, caregivers, and individuals become equal partners in the research process.
- There is no one-size-fits-all approach to providing information to individuals about clinical trials. Using a variety of communication techniques, like infographics and videos, increase the number of people who can understand the information.
This work was done with the direct support by each of the following partners who advance this work:
- National Institute of Neurological Disorders and Stroke provided support through Grant #U24MD006961
- Washington Heights and Inwood Council on Aging
- StrokeNet
- Latino Health Access
Keywords: Equitable Engagement; Patients, Caregivers, and Patient Advocacy Groups; Researchers
Links to Relevant Resources:
Definitions for each engagement objective can be found in the glossary.