Skip to main content

Table 4 Purpose, outcomes and feedback on the involvement

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

Country Is the purpose of patient involvement clear, and if so, can you say what it is? Does the input you provide make a difference, and if so, can you provide an example? Does the HTA agency provide any feedback on how the patient group information was used and incorporated into decisions?
Scotland (SMC) • To ensure appraisal committees understand impact of new drugs on quality of life; human perspective; patient experience of condition and treatment needs • Weighting and impact [of input] not clear.
• Help to create the ‘whole picture’ together with the industry and clinician information
• Contact with advocacy groups of 1.5 years has led to being listened to, arguments heard
• Group is advised of the decision but no feedback is provided
• Final reports or documents reference key points from patients, carers
England and Wales (NICE, AWMSG, rare diseases) • To ensure appraisal committees understand impact of new drugs on quality of life; human perspective; patient experience of condition and treatment needs
• Learning still – unclear
• Weighting and impact [of input] not clear.
• Worked with company, clinicians to provide patient access scheme to increase/show value
• Contact with advocacy groups of 1.5 years has led to being listened to, arguments heard
• Group is advised of the decision but no feedback is provided
• Final reports or documents reference key points from patients, carers
• Feedback is provided from meetings but may not be able to share it with the rest of the patient group
The Netherlands (ZIN) • Sets the content of the insurance package, like G-BAZIN • None since the Pompe, Fabry diseases example • No, communicated through industry
Canada (CADTH CDR and pCODR) Patient representatives
• It should be clear: the experience of living with [a disease], treatments
• Where value lies from the patient’s perspective, experience
Patient groups
• Yes – to give input
• To hear from patients, check a box
Somewhat – to understand impact on patients, fill unmet need
• It does make a difference. One drug was funded based on submission documenting how life was improved on treatment; identified relevant subgroup negatively affected by [a disease]
• Importance of single measures/associated symptoms on daily life; relevance of quality of life data from clinical trials; unmet need in a patient subgroup
• It demonstrates the impact on daily life, careers, finances, vision of life of carers in relation to quality adjusted life years
• In drafting final recommendations
• In final recommendations
Educate committee about disease, available drugs and use, intolerability
• Patient submissions are referenced in both interim and final recommendations (reports) on agency’s website
• Groups know their feedback is considered if a detail is queried
• No information on how it is used, its value
• Not yet
Yes (no further detail provided), feedback
Australia (PBAC) • Unclear • No example provided • No
Taiwan (NHIA, PBRS) • Providing input, collecting patients’ opinions No answer provided • An e-mail is sent acknowledging the submission
• Submission is listed in the meeting minutes
• No direct feedback is provided