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Analysis

Exposing drug industry funding of UK patient organisations

BMJ 2019; 365 doi: https://doi.org/10.1136/bmj.l1806 (Published 22 May 2019) Cite this as: BMJ 2019;365:l1806

Linked BMJ Opinion

Industry links with patient organisations—transparency is fundamental

  1. Piotr Ozieranski, assistant professor1,
  2. Emily Rickard, research assistant1,
  3. Shai Mulinari,, associate professor2
  1. 1Department of Social and Policy Sciences, University of Bath, Claverton Down, Bath, UK
  2. 2Department of Sociology, Lund University, Lund, Sweden
  1. Correspondence to: P Ozieranski p.ozieranski{at}bath.ac.uk

Drug company payment disclosures have limited transparency, but Piotr Ozieranski and colleagues find that they are increasing in value and are targeted at select patient organisations

Key messages

  • From 2012 to 2016 the drug industry donated over £57m (€65m; $73m) to UK patient organisations, with the annual sum more than doubling over the period

  • The funding benefited a small number of organisations and activities related to research and public involvement

  • The industry gave priority to commercially high profile conditions

  • Industry payment disclosures had limited transparency

Patient organisations—third sector entities comprising patients, carers, or both, that provide support and advocate for people with specific conditions12—are increasingly involved in policy and research.13 But their contributions have been questioned when they receive funding from drug companies.45 With few exceptions,67 existing research underscores that financial ties to an industry driven by profit risk turning patient organisations into seemingly independent “third parties”8910 that promote novel medicines, often with problematic clinical profiles, cost, or cost effectiveness.1112

These concerns are crucial in the UK, where drug development, appraisals, and commissioning rely extensively on input from patient organisations.13 Notably, patient organisations contributing to appraisals by the National Institute for Health and Care Excellence (NICE) have widespread, and often not entirely transparent, financial relationships with drug companies,14 which is consistent with findings from other countries.4515

We know little about the scale of industry funding, its main providers and recipients, and the nature of funded activities.16 These questions have not been answered by case studies of policy decisions or patient organisations17 or by cross sectional analyses of industry sponsorship using patient organisations’ websites,15 tax records,5 and surveys.4 But new sources of data generated by the industry offer …

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