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EPF at OECD: Focus on Patient Involvement and Patient Safety

EPF was recently granted a standing invitation to the meetings of the OECD working group on healthcare quality and outcomes (HCQO), and this month we have been contributing not only to that working group but also to a meeting of the PaRIS working party. This working party is developing a flagship international comparative survey on patient-reported outcome and experience measures (PaRIS) – an initiative in which EPF has been closely involved.

On 5 November, EPF Director of Policy Kaisa Immonen presented our perspective on meaningful patient involvement to the PaRIS working party members, who are representatives of the participating OECD Member States. She gave an overview of how the European Medicines Agency involves patients and consumers in its activities. She also emphasised aspects of meaningful patient involvement such as representativeness, inclusiveness, incorporating the patient voice early and supporting involvement through appropriate structures and investment.

On 7 November at the HCQO working party, she presented EPF’s work on patient safety and in particular our focus on supporting patients’ and families empowerment in healthcare settings and culture change from paternalistic and disempowering to participatory and enabling. She also shared with the country representatives some feedback on the OECD’s draft PRIMs questionnaire. EPF has participated during the last year in the development of a survey on patient-reported safety incidents (PRIMs) with the aim of ensuring it includes questions that capture the patients/families’ experiences in a meaningful way, even if this may pose methodological challenges. 

As an example, Kaisa said that “some items need accommodate narrative input, as that will enable healthcare providers and professionals to understand patients’ feedback better and take appropriate actions. The survey also needs to capture whether patients or family members feel comfortable asking questions or raising concerns – and whether healthcare staff welcome their feedback. A welcoming environment is an important aspect of patient safety culture.”

For more information about our work on patient safety or with OECD please email policy@eu-patient.eu