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? |
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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 |
| • An e-mail is sent acknowledging the submission • Submission is listed in the meeting minutes • No direct feedback is provided |