Table 4 Interview questions asked to patient advocates, researchers, and funders
Questions | Group asked |
|---|---|
Have you come across any systematic guidance for collaboration with patients in research programs that you have been involved in? If yes, please let us know the source | Patient advocates Researchers Funders |
The usual roles for patient involvement in research projects are Project coordinator Steering committee member Consortium member Hub model Work package lead Associated partner Advisor/advisory board member Is any role missing? Can you say something about the strengths, weaknesses or each of the models? And how would they be made most effective? | Patient advocates Researchers Funders |
Patient organizations often fail to resource a lengthy application phase and pre-application meetings and document revisions. What would a fair process look like to cover those pre-application efforts, and what should be funded and what should not be funded? | Patient advocates Researchers Funders |
Here is a flow chart in the application phase of a research project, describing the process from the identification of partners, through the pre-application phase to the submission and review phase of the application (to patient advocates) What would a checklist for PATIENT ADVOCATES look like to guide the involvement of your patient organization in that application phase? (to researchers) What would a checklist for GRANT APPLICANTS look like to guide their involvement of patient organizations during the whole application phase? (to funders) What would a checklist for PATIENT ADVOCATES and for APPLICANTS look like to guide the involvement of the patient organizations in that application phase? | Patient advocates Researchers Funders |
(to patient advocates) What would help you to find those that apply for grants in your specific indication area and identify calls that are relevant for your patient organization? (to funders) What could the process of identifying the right patient organization for a grant application/ project look like? | Patient advocates Funders |
HOW should a tool or platform support to bring applicant consortia and patient organizations or patient experts together? Are you aware of any existing tools? Should each funder and patient community build one, or would you use a matchmaking tool / pool of patient experts of a third party, e.g., EUPATI, PFMD etc.? | Patient advocates Researchers Funders |
What mechanisms would support patient involvement happening in the phase when research topics and calls are defined? Have you seen things that worked and that did not work? | Patient advocates Researchers Funders |
(to patient advocates and researchers) Can you think of any Conflict of Interest in patient involvement in funding programs that would be different to Conflict of Interest criteria for academic experts and institutions? What could be done to avoid those in a funding program? (to funders) Can you think of any Conflict of Interest in patient involvement in funding programs that would be different to Conflict of Interest criteria for academic experts and institutions? What could be done to avoid those in a funding program? | Patient advocates Researchers Funders |
What is missing in the following questions / assessment criteria that may be applicable to call texts and grant reviews? Would you have other questions that are relevant? How will applicants assess patients’ needs, goals, concerns, or preferences? In which role and function will applicants involve patients in the proposed project? Is patient involvement adequately resourced? How relevant will the project outcomes and value be for patients? How will patients’ acceptance and relevance of the outcomes be evaluated? | Patient advocates Researchers Funders |
Are you aware of good practices for measuring and assessing PE in proposals? Have you seen meaningful scoring systems or metrics? | Patient advocates Researchers Funders |
If we were to create a handbook for patient advocates on the involvement in the REVIEW of funding proposals to help identify the most promising grant applications, what should be in such a handbook? | Patient advocates Researchers Funders |
If a funder would build a pool of patient experts that can be tapped for grant reviews panels, what should that look like? | Patient advocates Researchers Funders |
If we would provide training to patient advocates to improve their knowledge and skills to provide meaningful contributions to grant review panels, what would a curriculum need to cover? How much training should there be, and in which format? | Patient advocates Researchers Funders |
What would be your advice on the compensation of patient expert reviewers? | Patient advocates Researchers Funders |