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Patient and public involvement in biomedical research: training is not a substitute for relationship building

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Public and patient involvement (PPI) is increasingly an expectation of funders and policy-makers. Not all areas of health research are obvious or accessible to patients. Involving the public in preclinical… Click to show full abstract

Public and patient involvement (PPI) is increasingly an expectation of funders and policy-makers. Not all areas of health research are obvious or accessible to patients. Involving the public in preclinical and laboratory-based research in a mutually beneficial way can be challenging. Fundamentally, there is confusion among preclinical researchers as to what PPI is and how it is applied.1 PPI is not about unleashing the public into your laboratory; rather it is about increasing research relevance and cooperating with people living with rheumatic disease to enable careful and deliberate study design. In practice, how can you involve patients meaningfully and in line with European League Against Rheumatism recommendations2 if you have not already established mutual respect, a supportive environment and a relationship built on equal status? Too often, the literature aimed at guiding researchers …

Keywords: involvement biomedical; research; patient public; involvement; relationship; public involvement

Journal Title: Annals of the Rheumatic Diseases
Year Published: 2019

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