OBJECTIVES

The European network for HTA (EUnetHTA) deems patient involvement essential for the production of Joint Clinical Assessments (JCAs). Patients can provide experiential insights on living with the disease and identify important (sometimes even neglected) outcome measures. Due to the diverse European landscape for patient involvement EUnetHTA aims to build best practices for patient involvement in JCAs.

METHODS

The first three pharmaceutical JCAs aimed to include patients by conducting individual semi-structured interviews. Thereafter, the open call for patient input was used in pharmaceutical JCAs. Both methods aim for early patient involvement in the scoping phase of JCAs and contain, based on the HTAi questionnaire, general questions on living with the disease.

RESULTS

Patients were involved in eight of nine pharmaceutical JCAs. Suitable patients could not be identified in one JCA due to the tight production timelines. In two JCAs, semi-structured interviews were conducted, both interviewing a single patient once. One interview was conducted close to the publication of the JCA, limiting the impact of the patient involvement. The remaining six JCAs used an open call for patient input. On average, 4 patient organisations responded to the open calls. The early availability of the open call, allowed the input to be used when developing the scope of the JCA. Patient feedback on Health-related Quality of Life (HRQoL) and outcome measures proved most useful.

CONCLUSIONS

EUnetHTA piloted various methods for patient involvement leading to recommendations for patient involvement in JCA production. Due to challenges in timely identification of individual patients and the limited usability of individual interviews, the open call for patient input was piloted in several pharmaceutical JCAs. The open call proved useful during the scoping of a JCA, but will continuously be tested and evaluated to further improve patient involvement for a sustainable method for future European JCAs.