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EANM commitment towards involvement and engagement of patients and the public: learning from the UK experience

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Commonly referred to as patient/public involvement and engagement (PPI/E) as well as user involvement or lay involvement, PPI/E incorporates and integrates individual’s perspectives in the planning and improvement of healthcare… Click to show full abstract

Commonly referred to as patient/public involvement and engagement (PPI/E) as well as user involvement or lay involvement, PPI/E incorporates and integrates individual’s perspectives in the planning and improvement of healthcare services and research [2, 3]. Also known as patient advocacy or patient input, PPI/E is incorporated in daily clinical practice and throughout the different stages of research, reflecting issues that are important and relevant to those whom it potentially affects [4]. In 1996, the National Institute for Health Research (NIHR) in the UK established INVOLVE [5] which is nowwell rooted within research and strongly encourages PPI/E contributions, while even being mandatory when applying to funding bodies within the UK [4]. Across health and social care services, PPI/E ranges from management boards, commissioning boards, professional associations, amongst others and this reflects the acknowledgment that PPI/E is crucial to drive service improvement [3]. Across Europe, PPI/E has been gaining global momentum in recent years [6, 7]. PPI/E has been advocated by the European Lung Foundation [8] and together with NIHR, they developed tools for patients under the European Patient Ambassador Program (EPAP) to introduce patients to terminology and skills to work collaboratively with researchers and healthcare professionals [9]. Other initiatives include the European Patient’s Academy (EUPATI) which developed a focused and intense training for patients on the process of medicine development [10] and a recent European project, Patients Active in Research and Dialogues for an Improved Generation of Medicines (PARADIGM), aims to engage and involve patients in strategic research processes within the life cycle of medicines [11]. The impact of PPI/E may even extend to patient peer review, whereby patients, patients’ representatives and carers’ are invited to form part of the peer review process, as introduced in 2014 by the British Medical Journal (BMJ). In the UK, the NIHR recently published a research cycle model (Fig. 1) that captures the different stages of research where PPI/E can be involved. The model demonstrates that patients and public can be engaged from early phase research with identification of research themes right to dissemination of results to groups and forums and be co-authors in journal and newsletter articles. PPI/E members can establish links with key policy makers to support changes in practice and by recording the impact PPI/E on the study and publishing this alongside the main study findings provides support for researchers and future projects. PPI/E can help shape the research question and design, support the development of patient information sheets, consent forms and provide input on patient recruitment by assessing potential patient burden of the various nuclear medicine procedures. PPI/E work scope should also include data collection, analysis of data, attendance of steering group meetings and the dissemination of findings. Nuclear medicine and the overall imaging community are part of the workforce whowill ultimately translate science into This article is part of the Topical Collection on Editorial

Keywords: medicine; involvement engagement; research; ppi; patients public; patient

Journal Title: European Journal of Nuclear Medicine and Molecular Imaging
Year Published: 2019

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