COLLEGE OF MEDICINE AND HEALTH
Medicine, Nursing and Allied Health Professions

Patient Reported Indicator Survey (PaRIS): international survey on outcomes and experiences of patients with chronic conditions.

Funding: Organisation for Economic Co-operation and Development (OECD) 

Period: 01/02/2019-14/10/2023

Partners: PaRIS-SUR Consortium (NIVELUniversity of Exeter, IPSOS-MORIAvedis Donabedian FoundationOptimedis)

HSPRG Researchers: Valderas JM, Porter I, Evans JP, Martin J

Description

Many countries are facing a rapid increase of the numbers of inhabitants with one or more chronic conditions, which poses a challenge to their societies and health systems. To improve the quality of care, ameliorate health outcomes and control expenditures, countries are redesigning their health systems towards more people-centred and coordinated care delivery. To guide this process, countries could benefit from comparing the care experiences and health-related behaviours and outcomes reported by people with chronic conditions within their regions or in comparison with other countries. The Health Ministers of OECD Member countries and several other countries mandated the OECD in January 2017 to lead an effort to develop and implement such indicators and conduct analysis based on these indicators. This has resulted in the PaRIS-initiative. One of the work streams of PaRIS is to develop generic (i.e. non-disease specific) patient-reported indicators that are relevant and appropriate for adults with chronic conditions using primary or ambulatory care, and to pilot and implement these quality indicators in participating countries (PaRIS-survey). The HSPRG is part of the PaRIS-SUR Consortium that will be responsible for the PaRIS-survey, with specific responsibiilty for leading the development of the survey.

PaRIS-SUR objectives  

1. To develop a questionnaire for adults (aged 45 or older) with one or more chronic conditions who use primary or ambulatory care in one of the participating countries. This questionnaire will include questions on patient characteristics, care experiences, health-related behaviours and outcomes.

2. To develop a questionnaire for care providers working in primary/ambulatory care (hereafter, PC providers). This questionnaire will include questions on primary/ambulatory care clinic characteristics and characteristics of the (main) PC provider.

3. To translate, validate and cognitively test these questionnaires for use in all participating countries, together with National Project Managers (NPMs) appointed by these countries.

4. To design the data collection protocol, including definition of inclusion and exclusion criteria, sampling framework, sample size, guidelines for sampling and implementation of the survey. 

5. To tailor the survey methods to the local context, engage local stakeholders and develop country roadmaps for implementation of the survey in all participating countries, together with NPMs appointed by these countries.

6. To support National Program Managers (NPMs) in conducting a Field Trial of the PaRIS-survey in their countries.

7. To analyse the data from the Field Trial, to test the psychometric characteristics of the questions and scales, and propose adaptations to the questionnaires, if necessary.  

8. To support NPMs in conducting the Main Survey in their countries.

9. To analyse the data from the Main Survey, to provide insight for all key stakeholders (patients, providers and policymakers at a regional and/or national level) and to help them usie the data for their own purposes.

10. To provide technical and analytical support to the OECD Secretariat to prepare the international report summarising the results of the PaRIS-survey.