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Letter
Patient and public involvement in biomedical research: training is not a substitute for relationship building
  1. Anthony G Wilson1,
  2. John Sherwin2,
  3. Emma R Dorris1
  1. 1 UCD Centre for Arthritis Research, School of Medicine, University College Dublin, Dublin, Ireland
  2. 2 The Patient Voice in Arthritis Research, University College Dublin, Dublin, Ireland
  1. Correspondence to Dr Emma R Dorris, UCD Centre for Arthritis Research, University College Dublin, Dublin 4 D04 V1W8, Ireland; emma.dorris{at}ucd.ie

https://doi.org/10.1136/annrheumdis-2019-215595

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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 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 …

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    Footnotes

    • Handling editor Josef S Smolen

    • Twitter @ERDorris; @UCD_CAR

    • Contributors AGW provided clinical perspective; JS provided patient perspective and ERD provided scientific perspective. All authors reviewed and approved the manuscript.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.