• PCORI/Patient Priorities Project Evaluation Survey

    Thank you for participating in our patient priorities project! Your participation is vital to ensure that TBRS research reflects what matters most to TBRS patients and families, and that TBRS families are treated as research partners. To help us to continue this work and improve in the future, please fill out this short survey with your honest opinion of how the project was conducted. Thanks again!
  • Which of the following best describes your role? (select all that apply)*
  • How did you participate in this PCORI project? (Select all that apply.)

  • Patient-Centered Research

  • This project helped me better understand the importance of Patient-Centered Clinical Comparative Effectiveness Research (PCCER) and of including patients in research planning.
  • The project created meaningful opportunities for caregivers and individuals with TBRS to share their experiences and priorities.
  • The project made an effort to include people with different communication and accessibility needs.

  • Dissemination Workshop

  • Was the information presented during the workshop clear, understandable, and did it help you to understand the findings from the project?
  • Do you believe the proposed research priorities reflect what matters most to caregivers and individuals with TBRS?

  • Research Roadmap

  • What I saw from the Roadmap provides useful direction for future TBRS research.
  • This project helped identify research priorities that may have been overlooked previously.

  • Future Research

  • I feel more prepared to participate in or contribute to future patient-centered research.
  • Did participation in this project change your understanding of how individuals with intellectual and developmental disabilities can contribute to research?

  • Patient-Specific Questions

  • Did you feel comfortable talking with the interviewer?
  • Were the questions easy to understand?
  • Did you have enough time to answer?
  • Did you get the help you needed to share your answers?
  • Did you feel that the interviewer listened to you?
  • Did you get to talk about things that are important to you?
  • Would you like to share your ideas in another research project?

  • Caregiver-Specific Questions

  • How satisfied were you with the interview/focus group experience for you or your family member?
  • Did participating in this project change how you think about your family member's ability to contribute to research?

  • Thank you for taking the time to complete this survey! Your response helps us to adapt our future projects and deliver stronger results in the future. We could not improve without you.

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