Exploring the Difference That Patient Involvement in HTA Makes in Cancer

OBJECTIVES: Patient involvement is important and valuable in the context of health technology assessment (HTA) (INAHTA, 2021). Its importance has been reiterated by the draft Implementing Act of the EU Health Technology Assessment Regulation (HTAR) for Joint Clinical Assessments (JCA) of medicinal products, where it has been noted that patient organisations should be given the opportunity to provide their input on JCAs. Our research explored what difference patient involvement makes to HTA recommendations in oncology.

METHODS: The number of cancer patient group submissions to HTA agencies was identified from the IQVIA's Market Access Insights database. HTA recommendations made with, and without patient group submissions, were compared. The data included 871 HTAs between January 2020 and March 2023 conducted by CADTH, NICE, HAS, the G-BA and IQWiG and the SMC. A subjective assessment of the openness to patient involvement was conducted.

RESULTS: The number of patient group submissions has increased at CADTH (from 26 in 2020 to 27 in 2021 and 37 in 2022), NICE (26, 35, 50), HAS (4, 14, 52) and the SMC (21, 24, 28). Patient group submissions fell at IQWiG/G-BA (11, 18, 5). NICE received patient group submissions for 97% of cancer HTAs conducted, CADTH 84% and SMC 81% and are the agencies categorised as most open. There is no clear pattern in HTA recommendations with and without patient group submissions.

CONCLUSIONS: Patient involvement in HTA represents an increasing workload, which may cause capacity constraints, limiting the patient groups’ ability to respond to all HTAs. The number of patient group submissions made is likely to reflect agency approaches and patient group capacity. The difference patient group involvement makes to HTA recommendations requires more research. Patient groups may be optimising their involvement when it is likely that their submission will have the biggest impact.