Our study confirms that earlier concerns about the under-reporting of payments in relation to specific drug companies15 and charities36 37 in the UK were not isolated instances. It demonstrates that neither the industry self-regulatory system for disclosure of payments to patient organisations1 nor a state-run system built for broader financial transparency purposes prevented a high extent of under-reporting. Importantly, the under-reporting occurred despite the media and research salience of the transparency of financial relationships between the industry and patient organisations.19 38–40
Although some yearly variation might be expected given differences between when a payment was made and when it was received or spent, the overall large and seemingly increasing discrepancies between industry and patient organisation records are concerning. The number and value of payments disclosed by drug companies were likely to be higher because the ABPI Code has a formal definition of a payment and stipulates that payment values should be recorded whenever possible.13 Charity regulators lack similar specific requirements.41 Further, some patient organisations may redistribute money to other collaborators and therefore they may report smaller amounts than donating drug companies.42 Nevertheless, any differences between donor and recipient records should be minimised by the requirement for a written contract between the parties, introduced by the ABPI Code, implying a shared understanding of how much is paid, to whom and how.13
What also indicates under-reporting is that few companies and patient organisations had matching—or even broadly similar—records in the two datasets, with many having differences exceeding hundreds of payments or millions of pounds. Both drug companies and patient organisations had a larger number of payments in the other dataset, but for both sides the value of payments was greater in industry data. The contrast between the datasets was higher for patient organisations, with a majority having a greater number and value of payments reported in industry data. This pattern suggests inadequacies of the existing charity regulator governance of the reporting of corporate payments. It further corresponds with the results of a recent journalistic investigation into the under-reporting of payments by a major charity,36 37 prompting a rebuke from a charity regulator.43
We also unearthed unreported payments associated with companies missing from either dataset. The under-reporting of payments is further indicated by the fact that donor–recipient ties reported in both datasets were in minority. This was particularly the case for ties involving matching payment numbers or values. The extent of the overlap between donor and recipient lists reported in the two datasets was similarly limited. Therefore, donors and recipients rarely disclosed payments reported by the other side.
As drug companies from our sample signed the ABPI Code, missing payments indicate that they either did not meet the obligation to disclose or removed their online disclosure reports. We could not find any evidence of specific obligations for UK charities to name funders in their accounts.41 Their absence is motivated by concerns that ‘the loss of donor anonymity would result in a decrease in voluntary income reported by charities. There were also concerns about the practical implications and about how much interest “general users” of charity accounts would have in this disclosure’.44 Nevertheless, any unreported payments could be misleading for patient organisation members, supporters, expert bodies relying on patient testimonies,21 policymakers and the public.36 43 Unreported payments may indicate a culture of corporate manipulation of patient organisations.45 46 Indeed, an oft-used argument for increasing transparency of payments is that ‘sunshine’ mitigates against misbehaviour and undue influence.47 Crucially, despite challenges in achieving financial sustainability,48 some patient organisations do not accept industry funding.49 50
Finally, under-reporting should be minimised by codes and reporting standards seeking to ensure faithful disclosure. The ABPI’s self-regulatory authority, the Prescription Medicines Code of Practice Authority (PMCPA), is tasked with ensuring compliance under the ABPI Code, including through guidance and training, occasional active monitoring, and with the possibility to sanction companies that breach their obligations.51 52 Likewise, the UK Charity regulators monitor a selection of annual accounts annually and, in instances of inaccurate reporting, will contact the charity directly to provide advice or request the accounts be resubmitted.53–55
More broadly, a similarly high extent of under-reporting was found in Italy, with less than a third of patient organisations identified as funding recipients disclosing industry funding.19 High levels of under-reporting have also been identified internationally in relation to other recipients of industry payments, including authors of clinical practice guidelines23 24 and scientific publications.26 27 29
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