A ‘patient–industry complex’? Investigating the financial dependency of UK patient organisations on drug company funding

Abstract

We examined the minimum extent of dependency of UK patient organisations on pharmaceutical industry funding using drug company disclosure reports and patient organisation financial accounts from 2012 to 2016. We used linear regression to explain the overall share of industry funding (‘general dependency’) and top donor funding (‘company‐specific dependency’) in organisations’ income. Predictors included patient organisations’ goal; having members and volunteers; geographical scope of activity; headquarter location; expenditure/income ratio; and disease area. The prevalent low levels of general dependency (IQR, 0.1%–6.0%) and company‐specific dependency (IQR, 0.1%–4.3%) made a widespread capture of patient organisations unlikely, though only if one excludes the possibility of significant payment under‐reporting. However, organisations with considerably higher dependency than others might be more prone to co‐optation by industry. Of the 398 organisations, 18 (4.5%) and 8 (2.0%) had general and company‐specific financial dependency over 50%, respectively. However, the shares of outliers exceeding the third quartile plus 1.5 times IQR were 51 (12.8%) and 56 (14.1%) for each dependency type. Certain characteristics including activity profile (advocacy) or indicating limited access to resources (remote location) made organisations vulnerable to developing financial dependency. Future research should examine both financial and non‐financial links between the two sides and their impact on patient organisations’ activity.

Disclosure of Pharmaceutical Industry Funding of Patient Organisations in Nordic Countries: Can Industry Self-Regulation Deliver on its Transparency Promise?

“…Importantly, the suspicion of absent reports from some companies in Norway and Finland was associated with the lack of a centralized disclosure platform, consistent with the similar experience in the United Kingdom. 4,25,26 For example, 24 pharmaceutical companies, almost 40% of the total number, mentioned by UK patient organizations as donors in 2012–2016 did not disclose any payments. 26 From the perspective of transparency, it is therefore helpful that Norwegian and Finnish PTAs have set up gateways that should allow access to companies’ disclosure websites.…”

“…1 These collaborations often involve companies providing patient organizations with funding, 2 which is likely to increase their capacity. 3 At the same time, industry funding may shape patient organizations’ agendas and ideologies 2,4 —for example, prompting some industry-funded organizations to lobby governments for expanded access to novel drugs, 5–9 rather than to lobby industry to lower drug prices to achieve the same goal. 10,11 Furthermore, industry sponsorship may weaken patient organizations’ representativeness and credibility 12,13 and influence which organizations, voices, and diseases get more attention in society.…”

“…20 Only more recently have researchers been able to access more complete datasets, disclosed by pharmaceutical companies under self-regulatory frameworks set up by pharmaceutical industry trade associations (PTAs) across countries. So far, single-country studies of Australia, 21 Sweden, 14 the United Kingdom, 1,4,6 and the United States 22 have used these data to build national pictures of industry–patient organization ties, showing, for example, how funding is concentrated in commercially high-profile disease areas such as cancer, but not in low-profile ones such as mental illness, and how several large companies do most of this concentrated funding.…”

“…20 Only more recently have researchers been able to access more complete datasets, disclosed by pharmaceutical companies under self-regulatory frameworks set up by pharmaceutical industry trade associations (PTAs) across countries. So far, single-country studies of Australia, 21 Sweden, 14 the United Kingdom, 1,4,6 and the United States 22 have used these data to build national pictures of industry-patient organization ties, showing, for example, how funding is concentrated in commercially high-profile disease areas such as cancer, but not in low-profile ones such as mental illness, and how several large companies do most of this concentrated funding.In Europe, such research is enabled by the codes of the European Federation of Pharmaceutical Industries and Associations (EFPIA): starting in 2011, the Patient Organisation Code of Practice, 23 and starting in June 2019, the unified EFPIA Code of Practice itself. 24 The EFPIA Code lays down the minimum requirements for companies to follow to "ensure that relationships between the pharmaceutical industry and patient organizations take place in an ethical and transparent manner."…”

Comparing pharmaceutical company payments in the four UK countries: a cross-sectional and social network analysis

“… 17 Most recently, a UK study found headquarter distance from country capitals predicts patient organisations’ dependence on pharmaceutical company funding. 53 To date, research has not considered the locations of patient and healthcare organisations as the reporting requirements do not extend to disclosing country locations. 17 25 28 …”