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
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