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There is an accelerating movement calling for decision-making processes that centre the patient as the key driver of their own healthcare process. This concept of ‘Participatory Medicine’ is a world far removed from conventional, patriarchal or top-down healthcare approaches where the clinician ‘expert’ drove all decision-making processes, and the patient was merely a passive passenger along the journey. Organisations such as the Society for Participatory Medicine1 have empowered patients and helped change the archaic healthcare dynamic. Active patient engagement and participation is also growing steadily in research.
Patient and public involvement (PPI) is a pathway to improve the quality and the translation of research; patients participate as collaborators on research grants and authors on research outputs.2 Patients have also been embedded in research conferences, including Stanford University’s ‘Medicine X’ series of conferences where the patient is placed ‘at the centre of the academic medicine’.3 By actively contributing in these ways, patients are able to help clinicians and researchers understand the problems …
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