OBJECTIVES: Patient-experience survey data collected by patient organizations can be leveraged to inform patient-centered value and health technology assessment (V/HTA). While patient engagement in V/HTA has increased over time, it is unknown whether the use of patient-survey data in V/HTA reports has increased as well. Our objective was to describe use of patient-experience surveys in Institute for Clinical and Economic Review (ICER) reports.

METHODS: ICER VA reports were reviewed for patient-experience survey-data use/reporting within the patient and caregiver perspectives section of the report. All of ICER’s publicly available final reports from 2017-2022 (n=56) were accessed and reviewed. Descriptive attributes were abstracted, including: condition, report date, report title, survey used, survey publicly available, report update and condition revisited. A survey was deemed publicly available if the full instrument was accessible from the ICER report (appendix or via citation) and partially available if examples of items were accessible from the report.

RESULTS: From 2017-2022, less than half of ICER assessments referenced patient-input data via patient surveys collected by patient organizations (n=16). The frequency of survey use did not increase over time across reports (4/8 (50%); 4/12 (33.3%); 2/9 (22.2%); 1/11 (9.1%) 3/10 (30%); 2/6 (33.3%) for 2017-2022 respectively). For reports referencing survey data, instruments were not always publicly available; only 4/16 survey instruments were publicly accessible, and 5/16 surveys were partially available beyond survey result summaries.

CONCLUSIONS: Use of patient-experience survey data did not increase across ICER reports from 2017-2022. Survey data may not exist or other methods of data collection for patient-input may have been used as an alternative to surveys. When used, however, survey instruments were not always publicly available. This suggests a need for transparency and accessibility of patient-experience surveys used to inform V/HTA, which may enhance understanding of which/how data have been collected, and gaps in available data.