The pharmaceutical industry’s financial ties to patient organisations have long been discussed, predominately from a critical standpoint but with some advocates. Patient organisations are often registered charities, many of which may have limited funds, making conflicts of interests with industry unavoidable given the valuable funding they can provide. However, despite the importance of the policy debate surrounding these payments, their reporting by either side (donors and recipients) has never been compared. As crucial sources of information and support for patients, we rely on patient organisations to be transparent, and, as profit-driven corporations, we want to know who is receiving pharmaceutical industry money.
Collating big data sources
To facilitate a systematic comparison of two sources of disclosures, we had to collate industry disclosure reports and patient organisation annual accounts. The location and format of these two data sources differ greatly, therefore making them comparable was a key component of the research process.
First, we formed a database of pharmaceutical industry payments to patient organisations between 2012 and 2016. In June 2017 and January 2018, we searched the websites of 108 pharmaceutical companies which subscribe to the Association of British Pharmaceutical Companies Code. We established that 66 companies disclosed payments to patient organisations at for at least one year between 2012 and 2016. These payments, totalling 4,572 payments worth £57,305,289.2 to 489 UK patient organisations, were extracted into a single Excel database.
Of the 489 patient organisations reported as recipients of industry funding, 425 (86.9%) were registered with a charity regulator. A total of 1,428 annual accounts were identified, with 4,372 payments worth £58,668,293.6 reported from 167 donors. Of these, 200 organisations reported 1,661 payments worth £33,037,955.8 from 84 pharmaceutical companies.
Patterns of under-reporting identified on both sides
Overlap between the number of payments was low, with pharmaceutical industry and patient organisation reporting matching just 162 times (3.8% of industry data and 9.8% of patient organisation data). We identified a substantial 1,472 payments worth £14,023,475.41 worth of pharmaceutical industry funding not disclosed by 225 patient organisations in their charity accounts between 2012 and 2016. Just 200 (47.1%) of the patient organisation recipients of industry funding reported receiving pharmaceutical industry payments, of which just over half 102 (51%) had a list of donors that fully overlapped with industry data. We also identified 128 payments worth £1,610,321.1 absent from pharmaceutical industry disclosures.
What do our findings mean?
Whilst the under-reporting was much more substantial on the part of patient organisations, the pharmaceutical industry under-reporting is perhaps more worrying given existing stronger regulations for pharmaceutical industry disclosure. Patient organisations are under no legal obligation to disclose industry funding. This is a problem in and of itself, as the public and other interested parties have no consistent and systematic source of information about a specific patient organisations’ funding sources. What this also means, however, is that patient organisations which did not disclose pharmaceutical industry funding in our study cannot be deemed to have acted improperly.
Our research focused on systematic issues within the reporting of patient-industry ties by both donors and recipients. The most important policy suggestion emerging from our findings is that there is a clear need for the introduction of a standardised way of reporting of corporate funding, particularly by patient organisations. These reporting standards can only be enforced by the charity regulators, such as the Charity Commission for England and Wales.
Overall, what our research shows is that, in the immediate sense, there is a need for clearer guidance from charity regulators on how and where these payments should be reported. It is important that charities report funding from corporate donors in a detailed way, and certainly on a named basis so that charity members and supporters and we as members of the public know exactly which companies support a given charity, in what ways, and to what extent. This is important because funding received from specific donors might put a charity in the situation of a conflict of interest, for example, when it is providing expert testimony to bodies such as NICE or various NHS organisations. Worryingly, previous research identified that some patient organisations providing evidence to NICE do not consistently disclose this conflict of interest, making our findings all the more pertinent.
Transparent reporting of corporate funding is clearly in the long-term interest of both patient organisations and the pharmaceutical industry as it demonstrates that this funding is managed carefully with awareness of its possible implications for conflicts of interests. It also demonstrates good financial governance practice and builds trust in the charity’s activities. Going forward, there is a clear need for discussions to be facilitated between charities and pharmaceutical companies, as well as their respective regulators, to ensure these payments are disclosed transparently.
Emily Rickard, PhD Student in Social Policy, University of Bath
Dr Piotr Ozieranski, Senior Lecturer in Social and Policy Sciences, University of Bath