Analysis

Patient participation groups in general practice: what are they for, where are they going?

BMJ 2016; 352 doi: https://doi.org/10.1136/bmj.i673 (Published 18 February 2016) Cite this as: BMJ 2016;352:i673
  1. Stephen Gillam, senior visiting fellow1,
  2. Jennifer Newbould, research leader 2
  1. 1Department of Public Health and Primary Care, Institute of Public Health, University of Cambridge, Cambridge, UK
  2. 2RAND Europe, Cambridge, UK
  1. Correspondence to: Stephen Gillam sjg67{at}medschl.cam.ac.uk
  • Accepted 29 December 2015

Millions of pounds have been spent on patient participation groups in the past five years, but is anyone listening? Stephen Gillam and Jennifer Newbould look at the evidence

Patient participation groups began to emerge nearly 40 years ago and are well established in many general practices.1 The Care Quality Commission highlights their importance in ensuring that services are responsive to patients’ needs.2 Growth of patient participation groups expanded sharply in 2011 when an optional clause in the GP contract provided financial incentives for practices to set up “patient reference groups.”3 The clause stipulated that practices should gain feedback from their practice population, collate patient views by means of surveys, agree action plans, and publicise any resulting actions and achievements.3 Patient reference groups can be “virtual,” collating the views of patients online. The two terms, patient reference group and patient participation group, are often conflated.

At least two thirds of all practices in England have a patient participation group.4 Membership of the National Association for Patient Participation (an umbrella organisation which supports patient led groups in general practice) roughly trebled to over 1000 groups after 2011, and the association says that many practices were ill prepared. Practices were paid on a sliding scale related to population size for establishing a group. We estimate that payments totalled £80m (€100m; $116m) in the first two years of the scheme’s operation, but they have now been incorporated into the global sum for practice funding.

There remains uncertainty about what the money spent on patient participation groups has achieved. The Department of Health has provided no evidence of gains from this investment and there has been little research into their activities. Our literature search in PubMed retrieved only 35 relevant citations. Most of the articles were descriptive—for example, providing guidance …

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