OBJECTIVES: This study aims to provide an overview of the use of patient experience data (PED) health technology assessment (HTA), the role of patient representatives in HTA appraisals, and current opinions on the role PED should have in HTA.

METHODS: A targeted literature review was conducted in Embase to identify research exploring the use of PED in HTA and patient inclusion in appraisals. HTA guidelines were also evaluated to explore the role of PED in HTA decision-making.

RESULTS: In total, 41 articles met the inclusion criteria. In many countries, it is common to include patient representatives in the appraisal process. How patient input is weighed in the appraisal process could not be identified. In the literature authors suggest giving patients formal consideration, for instance by including them in multi criteria decision-making techniques. Besides QoL data for utility assessment, PED data seems to have a very limited formal role in HTA decision-making. Guidelines are lacking regarding the use of PED in HTA dossiers and regarding how PED should be used in decision-making (Germany being the exception). In several articles, authors call for guidelines and increased use of PED in HTA to improve decision-making and stimulate patient-centered healthcare.

CONCLUSIONS: There is a common perception that PED deserves a more prominent place in HTA and that patients should be seen as partners in appraisals. However, in most countries it appears that HTA bodies struggle with how to include PED in the HTA process, given the lack of clear direction in available HTA guidelines. This lack of direction impacts the PED inclusion in HTA submissions. More research and guidance on PED inclusion and patients involvement in the HTA decision-making framework may stimulate patient centricity in HTA.