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