JMIR Publications

ABSTRACT

Background:

Service users’ feedback is a key asset for organizations that want to improve their services. Organizations should facilitate the participation into co-assessment processes. From this perspective, studying how organizations are enabling their users to participate into evaluation activities is particularly important, especially when there are vulnerable or disadvantaged people, and the services to be evaluated can be life changing. This is the case in the co-assessment by paediatric patients experiencing hospital stay. It is a right of children and adolescents to have their voices heard when it comes to their own experience of hospitalization. Nowadays only a few attempts to continuously and systematically collect the experience reported by paediatric patients with respect to their hospitalization are documented in the international literature.

Objective:

The same is the case for the use of such data to undertake quality improvement actions in health care services. The present contribution describes the research protocol of a European project intended to develop and implement a continuous, systematic, and real-time paediatric patient-reported experience measures (PREMs) Observatory that will be shared by four European Children’s Hospitals, in Finland, Italy, Latvia, and the Netherlands.

Methods:

The VoiCEs project is based on an integrated mix of qualitative and quantitative methods. It consists of six different phases that are a literature review, an analysis of the previous experiences of paediatric PREMs from project partners, a Delphi process, a cycle of focus groups and/or interviews with children and their caregivers, a series of workshops with interactive working groups and a cross-sectional observational survey. A participatory action research (PAR) approach will be adopted to guarantee the direct participation of children and adolescents in the development and implementation phases of the project.

Results:

The expected results of each of the six above-mentioned phases of research are: (i) a deeper knowledge of published methodologies and tools of collecting and reporting paediatric patients’ voice; (ii) lessons learnt from the analysis of previous experiences of PREMs; a consensus process (iii) among experts as well as (iv) paediatric patients and caregivers/guardians, about a standard set of measures to be collected for the evaluation of hospital stay by patients; (v) the implementation of an European Observatory on paediatric PREMs; (vi) the collection and comparative reporting of the paediatric patients’ voice. In addition, the project is aimed at investigating and proposing innovative methodologies and tools for capturing the paediatric patients’ feedback directly, avoiding the intermediation of parents/guardians.

Conclusions:

Over the last decade, the collection and use of PREMs has gained importance as a research field. Children and adolescents have also been more and more taken into consideration as patients, to value their own perspectives. However, to date, there are not many experiences in the literature regarding the continuous and systematic use of paediatric PREMs data for timely healthcare performance improvement. In this perspective, the VoiCEs project provides room for innovation, by contributing to the creation of an international paediatric PREMs Observatory that is continuous and systematic, can be joined by other paediatric hospitals or hospitals with paediatric patients, and foresees the return of usable and actionable data in benchmarking.