“Patient experience data in regulatory and health technology assessment”

Submissions open now through 30 June 2027.

The Editors of Quality of Life Research are planning a special issue to advance understanding of how patient experience data can be effectively assessed and used in regulatory and health technology assessment decision-making to better integrate the patient voice into healthcare.

Globally, regulatory and health technology assessment (HTA) bodies recognise the importance of hearing from patients when products are being developed and evaluated. Patient-reported outcomes and other clinical outcome assessments are increasingly included in submissions to these bodies. 

Additionally, recent regulatory guidance also discusses the collection of patient preference information. This broader conceptualisation can be termed ‘patient experience data’ (PED). Despite this recognition, patient experience data are inconsistently included and evaluated by decision-makers. Understanding how different interest-holders approach this is essential for ensuring that patients’ voices drive healthcare decisions to ultimately improve patient outcomes and health-related quality of life.

This article collection encourages submissions that consider the assessment of patient experience, such as preference, symptoms, and health-related quality of life, to inform regulatory and HTA submissions and decisions. Submissions of original research, reviews and discussion and/or response papers addressing recent regulatory and HTA developments in the field are encouraged. Other potential topics for manuscripts may include the application of artificial intelligence and digital health technology in PED research.

The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.