Table 3 Support for patient representatives and patient groups involved in HTA
From: Patient advocate perspectives on involvement in HTA: an international snapshot
Country | What kind of support and guidance is offered by the agency? | What kind of training is offered by the agency? | What kind of information on the health technology is provided, and by whom? |
|---|---|---|---|
Scotland (SMC) | • Guidance offered by agency’s Patient and Public Involvement team • Guidance documentation exists • A clear framework for submission of input is provided on the agency website • Individuals participating in the process are greeted and briefed • Peer support is provided – group can contact other patient groups with experience in process • Has Public Involvement Network Advisory Group | Training and capacity building, ad hoc or yearly | • A form (recently revised by patients together with pharmaceutical industry) with information is provided |
England and Wales (NICE, AWMSG, rare diseases) | • Guidance offered by agency’s Public Involvement team • Contact person is provided • Guidance documentation exists and is sent out • Individuals participating in the process are greeted and briefed • A clear framework for submission of input is provided on the agency website • Peer support is provided – group can contact other patient groups with experience in submissions/process • Contact team exists but is not yet well established • No formal contact is provided • Support is provided for key group personnel | • Training and capacity building, ad hoc or yearly • Training is provided for patient groups but it is not specific for patient groups and not regular • No | • During scoping stage, background is provided on the drug • It is assumed we know about the treatment but we can request further information • It is possible to request information but no formal mechanism for this exists • The information is very limited – from clinical trials; if a patient has been in a relevant trial, the group obtains information from that patient |
The Netherlands (ZIN) | • No support is provided • A guidance document exists but requires updating | • No | • The group utilises whatever information its patients or umbrella organisation has • The media |
Canada (CADTH CDR and pCODR) | Patient representatives on HTA Committees • Orientation is provided • Topic orientated speakers • Online resources and sent materials • Monthly teleconference • Attendance at annual symposium Patient groups(provide input and/or feedback) • Online guidance and information • Agency has a contact person to answer questions • Has a patient advisory group (Patient Community Liaison Forum) | • Training in HTA • Training through group coursesa • Webinars are provided • No formal training; mentoring is done within the patient group itself | • Obtain information from the drug company • Obtain information from patients who have participated in clinical trials or are waiting for access • From conferences, journal articles |
Australia (PBAC, MSAC) | • No clear guidelines | • No | • The group is informed by the industry • Search for clinical trial data on our own |
Taiwan (NHIA, PBRS) | • Brief guidance provided on the agency’s platform • Meeting with patient groups to discuss involvement and provide information and guidance | • Training provided by International Research Based Pharmaceutical Manufacturers Association, Taiwan Association of Patient Organisations, • Training is provided by Taiwan Society for Pharmacoeconomics and Outcome Research | • Information is sought from pharmacists, doctors, patient groups and monthly symposia for patients • Information is sought from clinical trial staff in hospital, trial patients, patient organisations; HTA report; International organisations for relevant disease area, pharmaceutical companies |