Health information systems integrating patient-reported outcomes and experience: a scoping review

INTRODUCTION: Value-based healthcare (VBHC) implementation is seen as a priority in many healthcare systems worldwide because it advocates for the best health outcomes that matter to patients at the best cost. Patient-reported outcomes measures (PROMs) and patient-reported experience measures (PREMs) are increasingly used to capture this patient's perspective on their health and their experience of care. Consequently, to promote VBHC, an international emergence of health information systems integrating PROMs and PREMs has developed. OBJECTIVES: The goal of our study was to (1) identify the main existing health information systems integrating PROMs and PREMs and (2) describe how their use supports VBHC and value-based decision-making at meso or macro levels. METHODS: We conducted a scoping review using the Joanna Briggs Institute (JBI) methodology. We conducted a systematic search across MEDLINE, Embase, CINAHL, PsycINFO, Web of Science and Academic Search Complete databases. We carried out a mixed thematic analysis using deductive (frameworks of Franklin et al. and CIHI) and inductive approaches. RESULTS: We screened 7,497 papers from which the title and abstract of 526 papers were identified as relevant for full-text review. A total of 12 papers were retained for analysis identifying systems from six different countries. We described these systems according to four types of governance strategies. PROMs and PREMs tools were selected according to the population segments chosen. They were collected through paper, phone, and digital technologies. Barriers such as lack of time, administrative burden, reluctance to implementation and facilitators such as identifying champions, integrating patients into the process, efficient communication were described. The real-time reporting of data was an interesting innovation that was developed in several systems. PROMs and PREMs were used for benchmarking, quality improvement, performance evaluation but no concrete example of use were reported. CONCLUSION: This scoping review identifies international initiatives of health information systems integrating PROMs and PREMs. The mechanisms use to support value-based decision-making with this data at meso and macro levels are yet to be fully described. Nonetheless, these results will enable countries to learn from the approaches of others to improve the development and implementation of similar initiatives to support value-based healthcare decision-making.