How do chronically ill people experience their medical care? How are their needs dealt with, especially in the outpatient area? How do they rate waiting times, the transfer of information between doctors, their quality of life, or their psychological well-being, for example? The Organisation for Economic Cooperation and Development (OECD) is investigating these questions with a largescale study, comparable to the PISA study in the education sector.
As part of the so-called “PaRIS Study – International Survey on Outcomes and Experiences of People Living with Chronic Conditions”, experts from several countries are working together on the development, standardisation, and implementation of a new generation of indicators that measure the results and experiences of chronically ill patients from outpatient health care. For the first time, they are being systematically recorded across borders. The focus of the survey is on Patient-Reported Experience Measures (PREMs) and Patient Reported Outcome Measures (PROMs). The PREMs relate to how patients experience health care in terms of accessibility, coordination of care, and communication, the PROMs to quality of life, physical functioning, and the psychological wellbeing of those affected.
Care should become more patient-centred
The study runs in three phases: Two questionnaires will be developed from the beginning of 2020 to the end of the year, one for affected patients and one for general practitioners. OptiMedis was in charge of the creation of the physician questionnaire, which mainly records structural characteristics of the practices or clinics and, together with the partners, creates the patient questionnaire, which contains PREM and PROM scales and also evaluates health literacy, health behaviour, and sociodemographic characteristics. First, relevant questionnaires were identified and analysed with regard to their suitability for the study according to several criteria. The questionnaires are to be finalised with the help of a Delphi survey in September and October. From mid-2020 to mid-2021, the questionnaires will then be tested in the participating countries and adjusted if necessary, after which the main surveys will take place in the participating countries and the results will be analysed and published. In these two phases, OptiMedis and its consortium partners will support data collection in more than 15 OECD member countries.
The results of the survey will show how the quality of care varies between and within countries. Through benchmarking, the countries can learn from other approaches – with the aim of optimising outpatient GP care and making it more patient-centred.
The consortium leader of the PaRIS study is the Dutch Institute for Health Systems Research (NIVEL). In addition to OptiMedis, the consortium also consists of the following partners: Ipsos MORI, London, United King-dom; University of Exeter, Exeter, United Kingdom and Avedis Donabedian Institute, Barcelona, Spain.
Picture source: istock