Patient Advocates

Each steering committee and task force has two patient advocate members. Advocate members also serve on the Patient Advocate Steering Committee (PASC), which works to ensure that advocates are effectively and consistently integrated with the development and evaluation of clinical trials within those groups. Advocates on steering committees and task forces:

• Ensure that the concept evaluations include consideration for the patient community at large
• Review trial inclusion and exclusion criteria for maximal patient participation
• Review and update strategic priorities for a given disease or research area and review accrual to ongoing trials
• Develop and share best practices for patient advocate interactions in scientific steering committees through PASC

Example of Program Impact: Advocates participating on steering committees and tasks forces provide the patient perspective and ask critical questions that can guide the direction of conversation and may impact the final trial design. In past reviews they have emphasized topics such as reasonable timeline for results, burden on trial participation (side effects, number of visits), and evaluating the importance of research based on making a difference for patients. 

PASC co-chairs: Josh Mailman and Patty Spears

Contact

For information about how to get involved as a patient advocate, contact the NCI Office of Advocacy Relations.

For more information about PASC, contact Elena Schwartz, Ph.D. at elena.schwartz@nih.gov.