Skip to main content

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
  1. ainformation provided by ‘patient representatives’ sitting on an HTA agency’s committee, and members of the patient groups submitting to an HTA agency, is separated out for clarity