Using patient-reported measures to drive change in healthcare: the experience of the digital, continuous and systematic PREMs observatory in Italy

Abstract

Background: The use of Patient Reported Experience Measures (PREMs) has great potential in healthcare service improvement, but a limited use. This paper presents an empirical case of PREMs innovation in Italy, to foster patient data use up to the ward level, by keeping strengths and addressing weaknesses of previous PREMs survey experiences. The paper reports key lessons learned in this ongoing experience of action research, directly involving practitioners. Methods: The aim of this paper is to present the results of an ongoing action research, encompassing the innovation of PREMs collection, reporting and use, currently adopted by 21 hospitals of two Italian regions. The continuous and systematic PREMs collection has been implemented between 2017 and 2019 and includes: a continuous web-based administration, using web-services; an augmented and positive questionnaire matching standard closed-ended questions with narrative sections; the inclusion and benchmarking of patient data within a shared performance evaluation system; public disclosure of aggregated anonymized data; a multi-level and real-time web-platform for reporting PREMs to professionals. The action research was carried out with practitioners in a real-life and complex context. The authors used multiple data sources and methods: observations, feedback of practitioners, collected during several workshops and meetings, and analysis of preliminary data on the survey implementation. Results: A continuous and systematic PREMs observatory was developed and adopted in two Italian regions. PREMs participation and response rates tend to increase over time, reaching stable percentages after the first months. Narrative feedback provide a 'positive narration' of episodes and behaviours that made the difference to patients and can inform quality improvement actions. Real-time reporting of quantitative and qualitative data is enabling a gratifying process of service improvement and people management at all the hospitals' levels. Conclusions: The PREMs presented in this paper has been recognized by healthcare professionals and managers as a strategic and positive tool for improving an actual use of PREMs at system and ward levels, by measuring and highlighting positive deviances, such as compassionate behaviours.

Piloting a web-based systematic collection and reporting of patient-reported outcome measures and patient-reported experience measures in chronic heart failure

“…A report has been produced to describe the design and implementation processes together with preliminary results of the pilot phase 36 and researchers are working to expand data collection also in other Tuscan LHAs and in other Italian and foreign regions, like they have already done with PREMs survey. 29 37 …”

“…This experience is part of the Tuscan PROMs and PREMs Observatory that will be briefly described in the next paragraphs (further information can be find in refs. 29 30 ). Specific characteristics of the pilot, its preliminary results and managerial implications will be described and discussed.…”

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“…The conditions imposed by central governments may lead to elevated levels of anxiety or depression related to the imposed physical distancing, quarantine, lockdown measures or job losses, each of which should be investigated in their own right. This should be closely monitored to address the situation in a timely manner, for instance, by including patient-reported experience and outcome measures (PREMS and PROMS) in regular surveys and integrating this in clinical practice [24]. In most countries, data on the quality of mental healthcare is currently scarce and often limited to utilisation and, at times, to suicide data.…”

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“…At the same time, the physicians' perception of the final goal and the beneficiaries of the PROMs initiative is fundamental. High performers consider patient reported data as a tool able to produce value for themselves as well as for a wider range of stakeholders: the patients, other physicians, and the health care system as a whole . In fact, high performers argue that the PROMs initiative leads to an increased attention towards patients, both from themselves and from the ward staff.…”

“…Those administration methods posed several challenges, in line with the main disadvantages reported by the international literature . Also, reporting and consequent use of patient data suffered from the weaknesses of the administration method . This pushed the regional administration to seek an alternative and sustainable collection method for patient reported measures.…”