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Original research
Under-reported relationship: a comparative study of pharmaceutical industry and patient organisation payment disclosures in the UK (2012–2016)
  1. Piotr Ozieranski1,
  2. Marcell Csanádi2,
  3. Emily Rickard1,
  4. Shai Mulinari3
  1. 1Social and Policy Sciences, University of Bath, Bath, UK
  2. 2Syreon Research Institute, Budapest, Hungary
  3. 3Sociology, Lunds Universitet, Lund, Sweden
  1. Correspondence to Dr Piotr Ozieranski; p.ozieranski{at}bath.ac.uk

Abstract

Objectives To examine the under-reporting of pharmaceutical company payments to patient organisations by donors and recipients.

Design Comparative descriptive analysis of payments disclosed on drug company and charity regulator websites.

Setting UK.

Participants 87 donors (drug companies) and 425 recipients (patient organisations) reporting payments in 2012–2016.

Main outcome measures Number and value of payments reported by donors and recipients; differences in reported payments from/to the same donors and recipients; payments reported in either dataset but not the other one; agreement between donor–recipient ties established by payments; overlap between donor and recipient lists and, respectively, industry and patient organisation data.

Results Of 87 donors, 63 (72.4%) reported payments but 84 (96.6%) were mentioned by recipients. Although donors listed 425 recipients, only 200 (47.1%) reported payments. The number and value of payments reported by donors were 259.8% and 163.7% greater than those reported by recipients, respectively. The number of donors with matching payment numbers and values in both datasets were 3.4% and 0.0%, respectively; for recipients these figures were 7.8% and 1.9%. There were 24 and 3 donors missing from industry and patient organisation data during the entire study period, representing 38.1% and 3.6% of those in the respective datasets. The share of donor–recipient ties in which industry and patient organisation data agreed about donors and recipients was 38.9% and 68.4% in each dataset, respectively. Of 63 donors reporting payments, only 3 (4.8%) had their recipient lists fully overlapping with patient organisation data. Of 200 recipients reporting industry funding, 102 (51.0%) had their donor lists fully overlapping with industry data.

Conclusions Both donors and recipients under-reported payments. Existing donor and recipient disclosure systems cannot manage potential conflicts of interest associated with industry payments. Increased standardisation could limit the under-reporting by each side but only an integrated donor–recipient database could eliminate it.

  • health policy
  • protocols & guidelines
  • medical ethics
https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Footnotes

  • Contributors PO conceived and designed the study, managed, analysed and interpreted the data, as well as drafted the article. MC analysed the data and drafted the article. ER collected and managed the data, and drafted the article. SM designed the study, contributed to interpretation, drafted the article.

  • Funding SM and PO's work on this study was supported by the grant 'What can be learnt from the new pharmaceutical industry payment disclosures?' awarded by the Swedish Research Council for Health, Working Life and Welfare (FORTE #2016-00875). ER's work was funded through the above grant.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The ethical implications of this study article were approved via a peer ethics review process at the Department of Social and Policy Sciences, University of Bath in April 2016. This study did not require a full ethical approval as it relied on publicly available data aggregated at the organisational level.

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

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information. The authors of this study agree to share data underpinning this study in the form of web supplements available from the University of Bath Research Data Archive. The raw data poses no risk to anonymity of individuals as it draws on publicly available reports concerning financial transfers between organisations. The reference for this dataset is: Ozieranski, P., Csanadi, M., Rickard, E., Mulinari, S., in press. Underreporting of drug industry payments to patient organisations in the UK (2012-2016). Bath: University of Bath Research Data Archive. https://doi.org/10.15125/BATH-00784

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