Table 5 Questionnaire
From: Patient advocate perspectives on involvement in HTA: an international snapshot
| Information sought | Response | Any further comments |
|---|---|---|
| 1. Your name | ||
| 2. Your patient group affiliation | ||
| 3. The country(ies) in which you mostly work | ||
| 4. The agency or organisation that your patient group provides patient input for | ||
| 5. At what stage(s) of the process is this input sought? e.g. at scoping or protocol stage, for a scientific report, when the submission goes to the decision making committee | ||
| 6. Who is the input from? e.g. patients, carers, patient experts, public/consumers | ||
| 7. How are they involved? e.g. committee member, consultations, providing information, templated submissions, hearings | ||
| 8. Is there a framework for the input and is clear guidance provided by the agency or organisation? | ||
| 9. Is training or capacity building provided – and if so, by whom? | ||
| 10. Is the purpose of providing input clear – what do you think it is? | ||
| 11. How does the agency or organisation identify which patients, advocates or patient groups to contact for input? e.g. database held by agency/organisation, in newsletters, call for submissions on website | ||
| 12. What support does the agency or organisation provide? – you may wish to give an example | ||
| 13. What information do you receive about the new medication, and who provides it? | ||
| 14. Is feedback provided on the input? e.g. how the patient group/organisation’s submission was used and how it informed decision making | ||
| 15. Does the agency or organisation have a ‘patient advisory group’ to assist it in its work? - if so please describe | ||
| 16. Any other comments – and can you provide us with an example of when you felt your input made a difference? |