Under-reported relationship: a comparative study of pharmaceutical industry and patient organisation payment disclosures in the UK (2012–2016)


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.

(Image: madstreetz/Flickr)


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/.

Strengths and limitations of this study

  • We examine the under-reporting of pharmaceutical industry payments to patient organisations using large samples of donors and recipients over a period of time.

  • We systematically compare the under-reporting by donors and recipients using five complementary measures at different levels of analysis.

  • One key limitation is that the samples of donors and recipients were not exhaustive.

  • The full extent of under-reporting remains unknown as no definitive list of payments exists.


Many patient organisations accept funding from drug companies. A recent UK analysis showed that the industry donated over £57 million (€65 million; $73 million) to 508 patient organisations, with the annual sum more than doubling from 2012 to 2016.1 Another study of 289 US patient organisations found that 156 (67%) received funding from for-profit companies, with a median proportion of 45% of their income coming from drug, medical device or biotechnology companies.2 Although industry funding may benefit patient organisations,3 4 it raises concerns about potential conflict of interests (COIs) compromising patient organisations’ independence and credibility.5–10

Both donors11 and recipients4 assert that any COIs can be managed by careful disclosure of funding. On the donor side, since 2012 members of pharmaceutical industry trade groups in European countries,12 such as the Association of the British Pharmaceutical Industry (ABPI), have disclosed payments to patient organisations annually on each company’s website, including their monetary value and purpose.13 In the UK, the number of companies subscribing to the ABPI Code also includes over 60 non-members of the ABPI; hence, nearly every relevant company is covered.14 However, the self-regulatory approach to payment disclosure has shortcomings, including absent reports, unclear or inadequate payment descriptions and unstandardised reporting.1 15 Likewise, on the recipient side, disclosures published on patient organisations’ websites have been criticised as incomplete or uninformative.16–20 In the UK, a possibly more reliable, yet rarely examined,15 21 source of disclosures are mandatory annual accounts of patient organisations registered as charities with an annual income over £25 000. These accounts serve a dual-purpose of detailing the charity’s activities and ensuring financial transparency.

Notwithstanding the shortcomings of each side’s disclosures, and the potentially complementary information they provide, donor and recipient disclosures are rarely compared. One exception is a recent UK study which identified companies not disclosing payments to patient organisations being mentioned in their annual accounts as donors.15 Another UK study found discrepancies between annual accounts of some patient organisations contributing to health technology assessment in England and drug company payment disclosures.21 Similarly, discrepancies were found between sponsorships reported on patient organisation and drug company websites in Italy.19 More broadly, cross-interrogation of different data sources has revealed undisclosed industry ties among treatment guideline panellists,22–24 clinical trialists, authors of medical journal articles25–29 and some clinical commissioning groups30 and National Health Service trusts in England.31

We examine the under-reporting of payments to UK patient organisations from 2012 to 2016 by comparing payment disclosures made by 87 companies to 425 patient organisations with the annual accounts of the same set of patient organisations. Specifically, by considering the extent to which the industry and patient organisation disclosures differ regarding who provided and received funding, and how much was paid and received, we examine the reliability of the two disclosures systems said to neutralise concerns about COIs.

Strengths and limitations

This is the first study examining the under-reporting of payments to patient organisations using large samples of donors and recipients over a period of time. It systematically compares the under-reporting by the two sides using five complementary measures. These measures account for the varying nature of different types of payment data and therefore can be replicated elsewhere.

Our study has several limitations. First, while Disclosure UK covers a vast majority of the UK pharmaceutical industry,14 our sample was not exhaustive, as demonstrated by additional companies found in patient organisation accounts. Second, excluding companies outside of our sample is likely to have underestimated the under-reporting but reaching data saturation would require several further rounds of data scrapping. Third, we identified patient organisations using drug company disclosure reports, but sampling starting from patient organisations could have produced different results. Fourth, patient organisations registered with charity regulators but with yearly income lower than £25 000 are not required to submit annual accounts. Therefore, we might have excluded, entirely or in specific years, some of the patient organisations identified as recipients of industry funding, if their yearly incomes were below that threshold. Fifth, some patient organisations were excluded due to the conversion of financial years into calendar years, which might have increased discrepancies with drug company disclosure reports. Sixth, some companies might have reported payments from 2016 in subsequent years, but the extent of delayed reporting is likely to have been minimal,1 and there was no delayed reporting in patient organisation annual accounts. Seventh, we only considered annual accounts submitted to charity regulators, while funders might have also (or instead) been disclosed on the charity’s website. However, website disclosures are likely to undergo frequent changes, and often lack transparency.16–20 Eight, evaluating the extent of under-reporting precisely is impossible because no definitive list of payments exists; consequently, there could be payments undisclosed by both sides. Finally, considering payment descriptions could reveal further discrepancies, including different payment goals reported by donors and recipients; it could also identify payments made via third parties (eg, public relations companies43) or benefiting patient organisations indirectly.15

Conclusions and policy implications

Although the full scale of under-reporting of industry payments to patient organisations remains unknown, it concerns both donors and recipients, and involves a considerable number and value of payments. Our findings put a question mark over the key claim that—at least in their current form—publicly available payment disclosures effectively address concerns about COIs resulting from industry payments.

We provide evidence for developing easily achievable improvements in the reporting of payments by both donors and recipients. Consistent with the ABPI Code, the ABPI’s self-regulatory authority, the PMCPA, should investigate any instances of missing payments among the companies that have ratified the Code (data never published or prematurely removed from the public domain), and, if appropriate, penalise companies concerned in accordance with its mandate and available financial (so-called administrative charges) and non-financial (mainly naming and shaming) sanctions.51 52 Separately, drug companies should improve data presentation following earlier recommendations,15 especially standardisation of reporting and elimination of payments with no assigned values. Companies should store data for at least as long as is required by the Charity Commission for England and Wales, that is 5 years. Reduction in under-reporting could also be achieved if the ABPI started to publish yearly reports summarising payments to patient organisations disclosed by companies, as the ABPI currently does with payments to healthcare professionals and organisations in the Disclosure UK database.32 33 Indeed, at least one European country—Sweden—has an industry-run, centralised disclosure database of payments to patient organisations,56 and there is no reason why the ABPI should not have the same.

Given the shortcomings of the industry self-regulatory system, charity regulators should introduce tailored solutions related to reporting corporate funding in annual accounts, including a standardised template comprising a short payment description (including payment form and goal), its value and donor name. Patient organisation websites should report this information separately or include clear signposting to the annual accounts. A key step in refining these solutions would involve in-depth exploration of perspectives of patient organisations. However, ultimately, only a single state-run permanent database integrating payments reported by drug companies and patient organisations could eliminate under-reporting.


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