SURVEY BACKGROUND:
A multi-stakeholder team of patient engagement specialists would like to invite you to participate in a 15-minute survey about payment rates for patient and caregiver involvement in healthcare research and innovation.
We aim to gain a deeper understanding of patient/caregiver views and experience with current US practices for determining patient/caregiver expertise and establishment of payment rates for participation as consultants, experts and/or co-investigators, as an initial information gathering phase of the project.
Your input is important as the survey results could lead to better understanding of current perspectives and practices related to patient and caregiver payment for providing feedback and expertise, and in the future, may inform best practices for assessing expertise, establishing payment rates, and providing training and support for patient and caregiver roles in research, medical product development and health care innovation.
WHO IS BEING INVITED TO PARTICIPATE: Patients, caregivers, and representatives leading patient and disease advocacy organizations.
WHAT WE ARE ASKING OF YOU: You will be asked to complete one brief, 15-20 minute electronic survey with responses based on your experiences. Please feel free to share with other patients and caregivers and those leading patient and disease advocacy organizations.
YOUR ANSWERS WILL BE TREATED CONFIDENTIALLY: We will not be able to link your personal information such as email address and name with your answers unless you voluntarily provide this information at the end of the survey, expressing your willingness to be considered for additional contact in the future. Your answers will be combined with those from others and we will report answers only in aggregate.
HOW YOUR INPUT WILL BE USED: We plan to share the results publicly in the form of a conference presentation and potential publication to help organizations such as healthcare systems, medical product developers, clinician investigators and patient advocacy organizations understand current practices and patient/caregiver perspectives on payment and support needed to be successful, which may help promote consistency across sectors.
WHO WE ARE:
Sarah Krüg, Founder, Health Collaboratory; CEO, CANCER101; Acting Executive Director, Society for Participatory Medicine
Bray Patrick-Lake, Director of Stakeholder Engagement, Duke Clinical Research Institute
WHO TO CONTACT FOR QUESTIONS: Please email any questions or concerns about your participation to Sarah Krüg, sarahkrug@cancer101.org
Thank you for your consideration!