Intended for healthcare professionals

Letters The BMJ’s own patient journey

The next step in the patient revolution: patients initiating and leading research

BMJ 2014; 349 doi: (Published 01 July 2014) Cite this as: BMJ 2014;349:g4318
  1. Effy Vayena, senior research fellow1
  1. 1University of Zurich, 8032 Zurich, Switzerland
  1. vayena{at}

The BMJ has taken the lead in facilitating meaningful patient partnership, but an important aspect of patient participation is underplayed in the editorial by Richards and Godlee.1 This is the phenomenon of patients (and their families, friends, and others) playing a leading part in initiating and conducting health research—part of the wider phenomenon of participant led research.

Recently articles have been published in reputable scientific journals that were the product of research proposals devised by and carried out by patient groups, often facilitated by online social media. These activities promise to add significant value to existing structures centred on investigator led research in universities and companies.2 3 4

This development not only deserves to be registered, and encouraged, but also has interesting synergies with other elements of patient partnership set out by Richards and Godlee.1 For example, the status of patients in the peer review of research articles takes on a different meaning if these patients are regarded not only as potential beneficiaries of research but also as potentially leading research. How this augmented status should be reflected in journal peer review procedures is an important issue.

What is in prospect, therefore, is a patient centred revolution that goes even deeper and has profounder implications since it challenges the dichotomy of patient versus researcher, providing further impetus for disrupting hierarchical relations in healthcare.


Cite this as: BMJ 2014;349:g4318


  • Competing interests: None declared.


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