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Table 2 How are the patient groups identified, in what role are they involved, and when (at what stage)

From: Patient advocate perspectives on involvement in HTA: an international snapshot

Country How does the agency reach out to patient groups? Stage of HTA at which the patient representatives or patient groups are involved? How are the patient representatives or patient groups involved in the HTA?
Scotland (SMC) • Patient group is registered with the HTA agency, and notified by the HTA agency • Appraisal stage • Provide submission to the agency
• Participate in meetings of patient groups, clinicians, agency
England and Wales (NICE, AWMSG, rare diseases) • Patient group is registered with the HTA agency, and notified by the HTA agency
• At scoping stage, stakeholders are asked to recommend patients [or patient groups
• Through disease registry, newsletters or social media
• Scoping stage workshop
• Appraisal stage
• Appeals of recommendations
• Scientific advice stage
• Provide patient experts who participate in workshops or committee meetings
• Provide submission to the agency
The Netherlands (ZIN) • Patient group is registered with the HTA agency
• HTA agency reaches out to umbrella groups
• Appraisal stage • Provide submission to the agency
• Provide a statement at public meetings
Canada (CADTH CDR and pCODR) Patient representatives
Patient groups
• Patient group is registered with the HTA agency, and notified by the HTA agency
HTA agency posts on its website a call for submissions by patient groups
• Unclear answer (when submission goes to committee) • As members of an HTA committee
• Provide comments on draft recommendations (patient groups)
Provide submissions to the agency (patient groups)
Australia (PBAC, MSAC) • No answer provided, learn from industry • Appraisal stage • Provide submission to the agency
• Hearings
Taiwan (NHIA, PBRS) • Users registered online
• HTA agency posts on its website a call for submissions by patients, groups
• Unclear • Patient representatives attend committee meetings
Provide short submission to the agency