by EFNA’s Senior Policy Advisor, Tadeusz Hawrot

 

According to the Organisation for Economic Co-operation and Development, there is a growing recognition that the engagement of civil society, particularly patients and providers, is as an important contribution to improve outcomes in health research and delivery. The strong intrinsic argument for involving patients and health care consumers in decision-making processes for health care is clear: if health care is directed towards people’s health needs, outcomes and experiences, then they are the source to inform health care decisions. Further, there is a growing evidence base supporting civil society engagement demonstrating that involving patient voices in decision-making can help to improve the relevance and quality of some aspects of health care.

Nonetheless, as of 2021, only 11% of the countries reported that patients had a formal role in at least four of five key decision-making areas of health policy (voice, choice, co-production, integration and respectfulness – see more in the table 1.1 below). Although the importance of patient voice in health decision-making is recognised, most countries still lack the capacity and institutional directives to integrate patient perspectives more inclusively in decision-making for health care policy and research.

In support of national initiatives to create more people-centred health systems, in 2017 the OECD launched the Patient-Reported Indicator Surveys (PaRIS) initiative to systematically measure outcomes and experiences of health care that matter most to people in a way that could be used to inform policymaking. The flagship project within the PaRIS initiative is a survey of patient-reported outcome and experiences measures (PROMs and PREMs) of people living with chronic conditions, who are managed in primary care (the PaRIS survey).

The PaRIS survey has been developed together with government officials, patients, providers, and researchers. Participation of civil society, particularly patients, in the development and implementation of the PaRIS survey to capture patient outcomes and experiences has been a core principle of the study design.

The OECD postulates that the meaningful involvement of patients first will improve the relevance of the survey because patients have an experiential knowledge; they are experts on their own lives, needs and interests. Therefore, they know best whether what is asked in the survey are issues that matter to them. Second, it will contribute to the methodological quality of the survey; patients are the ones who are expected to fill out questionnaires, so they know best whether questions are well understood. Third, it might contribute to better response rates; patients know best how they want to be approached and invited and what would make them decide to participate or not. Moreover, if patient organisations are convinced that the survey is beneficial for patients and endorse the initiative, this may positively influence response rates and the policy impact of the survey overall.

The survey is currently being implemented in twenty countries and in January 2023 the OECD has published a paper reporting on the stakeholder engagement in design, development and implementation of the PaRIS survey Field Trial in seventeen countries: All hands on deck: Codeveloping the first international survey of people living with chronic conditions: Stakeholder engagement in the design, development, and field trial implementation of the PaRIS survey.

The report describes the engagement activities that took place in the design and development phase and the implementation of the PaRIS Field Trial.

Engagement strategies were analysed by target group (patients, providers, or other stakeholders), and engagement level (co-designing, involving, consulting, and informing).

The results provide valuable lessons for the implementation of the full PaRIS survey in 2023 and illustrate how stakeholders could be more actively engaged in health services research and policymaking.

In addition to this work, in December 2021 the OECD published a policy study presenting a framework on People-Centred Health Systems. It identifies five key dimensions: ensuring voice, choice, co-production, integration of care, and respectfulness.

For instance, the indicator on voice identifies the extent to which patients have a formal role in health policy making by assessing whether patients have a formal role in: (1) licensing of pharmaceuticals, (2) coverage or reimbursement, (3) health technology assessment, (4) decisions related to service planning, and (5) definition of public health objectives.

The OECD work on active and meaningful patient engagement can provide valuable framework for the implementation of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders which has targets such as devising national awareness campaigns and national neurological plans. We know from other disease areas such as cancer and diabetes that patient groups played a central role in developing national strategies and were key to the successful adoption and implementation of national plans and campaigns.