Appendix 1 An advocate’s role in research Survey questions for advocates 1. How were you prepared/trained to participate in the research review panels? a. What were you required to have? b. What were you recommended to have? 2. Do you believe your training was adequate for the type of reviews you have done? (Please explain your answer) 3. What organization(s) have you reviewed for? What types of research have you reviewed? (psychosocial, biology, immunology, etc.) 4. Are you satisfied with the process? What works? What does not work? 5. How do you feel about the fact that patient advocates are asked to “assume the science is good?” 6. What could the applicant include in the proposal that would help the advocate understand the science? 7. How do you prepare for the reviews? 8. What do you look for when reviewing proposals? 9. What does it mean to you to be an advocate? 10. What recommendations do you have for funders that would improve the process? 11. What recommendations do you have for advocates that would improve the process? 12. Is there anything else you would like to share? An advocate’s role in research Survey questions for scientists 1. How long have you been participating as a scientific reviewer on research review panels? 2. What kind of organization(s) have you reviewed for? What types of grants have you reviewed? (psychosocial, biology, immunology, etc.) 3. How do you feel about having patient advocates sit on the panels with you? 4. What role do you think advocates play? 5. Is an advocate’s input useful or disruptive? 6. What is the efficacy of an advocate’s participation? 7. Do you think advocates are well trained? If not, please explain and identify what you think would improve the training. 8. What recommendations do you have for funders that would improve the process of having patient advocates sit on research review panels? 9. What recommendations do you have for advocates that would improve the process? 10. What other thoughts do you have on the process? Jane Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.