How patients´ voices can inform HTA decision-making in rare diseases?

– A follow-up on ISPOR Europe Conference 2022

Clinigma® participated in the annual conference of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Europe last month in Vienna, Austria.

Our booth provided the opportunity to connect with new and old clients, and the posters and panels from colleagues were a welcome confirmation that Clinigma® is offering meaningful, high-quality services that suit clients’ needs for listening to patient voices. While as our clients know Clinigma® has closely followed the FDA draft and published PFDD guidance documents in developing our service menu, we were pleased to hear NICE recommendations resonating with the FDA.

https://www.nice.org.uk/process/pmg36/resources/nice-health-technology-evaluations-the-manual-pdf-72286779244741

Our aim here is to inform you of the insight provided by Heidi Livingstone, Senior Public Involvement Adviser at NICE, UK on how patient feedback can add value and provide constructive input to NICE appraisals. In her presentation, she detailed what the committee wants from patients and its impact. Here it was stated that patient feedback can provide new evidence, help interpret evidence, and corroborate other evidence. Further, Heidi Livingstone also highlighted the value of patient feedback to better understand treatment impact, unmet needs, and quality of life.

Clinigma® appreciated the qualitative example offered demonstrating the role of thematic analysis in investigating the patient disease experience and improving awareness of the burden of disease. At Clinigma®, we value qualitative evidence with the same rigorous methodology that allows us to bring narratives to outcomes with both qualitative and mixed methods approaches to support drug development, Regulatory dialogues, and now also NICE appraisals.

ISPOR was a productive experience for Clinigma®, and this panel answered the question posed in the title, “How can the voice of the patient be better heard in HTA decision-making in rare diseases?” Clinigma® helps clients answer this question throughout the drug development cycle with services ranging from efficient ad hoc solutions such as our validated, standardized interview manual and data analysis plans to tailored initiatives featuring recruitment assessments and cultural adaptation of interview materials.

Feel free to contact Clinigma® to hear more about how we can support your planned NICE submissions with strong patient experience data collected in a very easy way.