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General medicine
Partnering with patients in the production of evidence
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  1. Peter J Gill1,2,3,4,
  2. Emma Cartwright5,6
  1. 1Department of Paediatrics, The Hospital for Sick Children, Toronto, ON, Canada
  2. 2Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada
  3. 3Institute for Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
  4. 4Centre for Evidence-Based Medicine, University of Oxford, Oxford, Oxfordshire, UK
  5. 5Patient Editor, The BMJ, London, United Kingdom
  6. 6Lee Kong Chian Medical School, Nanyang Technological University, Singapore
  1. Correspondence to Dr Peter J Gill, Division of Paediatric Medicine, Hospital for Sick Children, Toronto, ON M5G 1X8, Canada; peter.gill{at}sickkids.ca

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Introduction

Partnership with patients and carers in the production and implementation of evidence-based medicine (EBM) has long been highlighted as important and necessary.1 As outlined by David Sackett, the practice of EBM calls for the integration of external evidence and clinical expertise with the ‘patient's clinical state, predicament and preferences’ to determine if and whether it should be applied.2 This has led to the development of guidelines and principles around involving patients in the conduct, delivery, implementation and dissemination of evidence in healthcare.3 4

The past decade has witnessed a rapid increase in patient partnership in healthcare delivery.5 The 2017 EBM Manifesto identified patient partnership in the production of evidence as one of the key ways to develop more trustworthy evidence.6 Patients and carers are increasingly highlighted as having a key role in ensuring that new healthcare research is relevant, accessible and applicable to end users.7 Despite this increased awareness, there are still several challenges to support both researchers and patients to partner in the development of EBM. The EBMLive conferences (https://ebmlive.org/) have provided one platform to discuss some of these issues by bringing patients, researchers and clinicians together to tackle some of the uncertainty around how, when and where to involve patients in EBM. In this article, we describe some of the perceived challenges within patient and researcher partnerships in the production and implementation of evidence and highlight areas where future EBMLive conferences will explore. We also outline strategies on how researchers can better partner with, and support, patients to be involved in EBM.

Why partner with patients?

Patient partnership is morally necessary as patients are the individuals who are the most directly affected by the evidence generated. The ‘Nothing about us without us’ phrase is used by many patient groups calling for involvement in healthcare decisions. This …

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