EPF participates in international effort to assess health systems’ performance from a patient perspective


EPF has developed close cooperation with the Organisation for Economic Co-operation and Development (OECD) in the last years, namely on healthcare quality indicators. We are delighted to see that the patient perspective is more and more considered as added value to their work, and we will continue this collaboration in the hope that new indicators are actually meaningful for patients and co-designed with them.

The focus of healthcare indicators has until now only been on “hard” outcomes such as mortality and morbidity, according to clinical measures. That said, there is currently no way to benchmark performance across countries in terms of patients’ quality of life or functional outcomes. And to do that, one has to ask the patients. EPF has for several years been calling for patients’ priorities and experiences to be recognised and measured as key aspects of healthcare quality.

Countries acknowledge: patients’ views matter

In January 2017, the health ministers of OECD Member States mandated the OECD to develop tools for assessing health systems performance from the patient’s perspective, in a Ministerial statement titled “The Next Generation of Health Reforms”.

The aim of collecting data is to support health systems to become more knowledge-based and person-centred; to achieve better governance, particularly by reducing waste; to understand and plan for complex care needs; and to understand and manage the impact of new technological developments, such as personalised medicine.

The essence of the initiative – called Patient Reported Indicators Surveys or PaRIS – is the collection of comparable cross-country indicators on patient-reported outcome measures (PROMs) for different conditions, and patients’ experiences of care (PREMs). PaRIS comprises two work streams:

  1. in areas where PROMs/PREMs already exist, it will aim for the adoption of a validated set of standardised, internationally comparable indicators. The first areas to be explored are breast cancer and hip/knee replacements. 
  2. in areas where PROMs/PREMs do not yet exist, OECD will lead the development of internationally comparable indicators. These will be piloted in countries on a voluntary basis.

EPF: bringing the patient voice into the discussions

EPF has been developing a collaboration with the OECD healthcare quality indicators unit for some time, and participated in the Health Policy Forum in January and subsequent Healthcare Quality Indicators (HCQI) Expert Group meetings. EPF also co-ordinated patient input in a proposed core questionnaire on patient-reported (safety) incident measures (PRIMS), also currently under development. We have helped identify representatives of patients to the disease-specific working groups on breast cancer and hip/knee replacement.

This is a very important development, as EPF provides a clear “added value” by bringing to the table a patient perspective and acting as a “critical friend” in exploring how what really matters to patients can be best measured. We also act as facilitator for individual patients and patient organisations to get involved. It is significant that most existing PROMs have not been co-developed with patients; our aim is that the indicators that are ultimately selected for international comparison are meaningful for patients (whether they have been codeveloped or not) and that any new indicators are actually co-designed with patients.

What next?

One important future area will be looking at “generic” PROMs that could be applicable for any person living with one or more chronic conditions. The first exploratory meeting on this topic took place on 8 November, and the work will continue over the next years. EPF will involve its membership in these important discussions as the project advances.

About the OECD

The Organisation for Economic Co-operation and Development (OECD) is an international organisation whose name is usually associated with economic analysis. Indeed, its mission is to “promote policies that will improve the economic and social well-being of people around the world.” The OECD also collects and reports on a wide variety of health system data, including healthcare quality indicators, many of which are integrated into EU healthcare statistics and used to inform EU health policy, for example through the OECD country reports and the comparative “Health at a Glance” report.


Contact person: Kaisa Immonen, Director of Policy: kaisa.immonen@eu-patient.eu