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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?