In short
PaRIS is an international study initiated by the Organisation for Economic Cooperation and Development (OECD). The aim of this project is to develop and use standardised tools to collect and measure patients’ health outcomes (PROMs) and experiences of care (PREMs) at the primary care level.
It is the project’s ambition to understand to what extent the care provided meets the needs of the population. The results from the participating countries will be compared at a national and international level. The project will provide essential information to policy makers and practitioners about what is important to patients in their care, in order to optimise our care system, making it more patient-centred.
The OECD and an International Consortium (gathering health research experts) are in charge of the development of the study design and questionnaires.
Sciensano is responsible for implementing the survey in Belgium, in collaboration with the OECD and the International Consortium. National stakeholders are also involved, in order to find the best balance between adapting the survey to the national context and a harmonised framework across countries, to ensure a data comparability.
Project description
Many countries, including Belgium, are facing a rapid increase in the number of people living with one or more chronic diseases and the ageing of the population. This increase poses a challenge to their health systems. In order to improve the quality of care for these people, improve health outcomes and control expenditure, countries are reorganising their health systems towards more person-centred and better coordinated care.
To guide countries in this reorganization, the OECD has therefore taken the initiative to conduct a survey among its member countries to obtain more information on the functioning of primary care services from the patient’s perspective by collecting and analysing data provided by patients living with chronic condictions, including health experiences and outcomes. The results will help to identify gaps in the primary health care system, both in terms of how care is provided and for specific groups of patients or conditions that need the most attention.
PaRIS is a cross-sectional study, different data sources are combined for a complete analysis (
summary of indicators):
- characteristics of the national context of the health care system
- characteristics of the health care providers (how the practice works and the management of chronic patients)
- characteristics of the patients, PROM (quality of life, symptoms, function) and PREM (accessibility, communication, coordination of their care, patient involvement and proactivity …).
The questionnaires are developed by the OECD to ensure harmonisation of the data collected between participating countries.
The implementation of the study is carried out in two phases:
- A field trial, from 2021 to mid-2022, to test the procedures on a small sample of care providers and patients.
- The main survey, from mid-2022 to the end of 2023, on a large sample of care providers and patients at national level.
The sampling of participants is done in two stages:
- Recruitment of general practices
- Recruitment of patients from participating practices based on two eligibility criteria (≥ 45 years and having seen a GP within 6 months).
The project uses two separate questionnaires:
- One is addressed to the general practice, collecting information on the characteristics and working methods of the practice.
- The second one is to be completed by patients, it concerns self-reported data (no medical record data are collected), and it covers 4 main areas:
- demographic and socio-economic data
- experience with health care (PREM).
- health outcomes (PROM)
- health behaviour and lifestyle habits
Results from the survey will be reported by the OECD, showing how key outcomes and experiences meet the patients’ needs and vary across and within countries. This allows countries to benchmark and learn from each other’s approaches, both on the organisation of care and on the care monitoring of certain pathologies.
Participating practitioners will receive a report on the results of all patients participating through their practice. The patient questionnaire is a tool to support the care provider in moving towards a more patient-centred practice.
More info on how to participate
In accordance with art.14.1 of the GDPR
Project manager
Sciensano — Amélie Van Vyve - amelie.vanvyve@sciensano.be - 02/642.54.56
Contact details of the Data Protection Officer
Sciensano : dpo@sciensano.be/ - 02/642.51.02
Purposes of processing and legal basis for processing
The personal data are intended for the patients recruitment for the PaRIS study.
Legal basis: performance of a task in the public interest (GDPR: art.6.1.e.)
Categories of data collected
Name, first name, postal address, mobile phone number, age, gender
Data source
General practitioner patient medical record (source not publicly available)
The recipient of the data collected
Symeta Hybrid SA
Storage duration of personal data
Duration equivalent to the recruitment period and data verification estimated at 6 months
Right of access, rectification, erasure, restriction of processing, as well as the right to object to processing and the right to portability of personal data
To exercise your rights, please contact your doctor.
You can also contact Sciensano via the contact form.
You have the right to lodge a complaint with a supervisory authority in Belgium:
Data Protection Authority :
- +32 (0)2 274 48 00
- +32 (0)2 274 48 35
- contact@apd-gba.be
Data anonymisation procedures
The international partner, Ipsos MORI, which is responsible for the data analysis, provides a pseudonymisation code for each patient. The aim is to replace your contact details with a code, thus preventing your answers from being linked to your identity in order to guarantee confidentiality. Ipsos MORI will use this code to analyse the data. The link between the code and your identity will only be stored at national level for the time necessary to collect and verify the data. The code is also intended to link the patient’s results to the doctor’s results during analysis.
A precise description of the historical, statistical or scientific purposes of the processing
Collect quality of care indicators from patients with chronic diseases who use primary care. These include indicators of your health experience and outcomes, as well as demographic, socio-economic, health behaviour and lifestyle indicators.
Sciensano's project investigator(s):
Service(s) working on this project
Partners
