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

Abstract

Pharmaceutical companies regularly fund patient organizations. It is important for patient organizations’ credibility that there be transparency regarding this financial support. In Europe, the pharmaceutical industry promises to deliver transparency through self-regulation, as opposed to legally binding provisions, but self-regulation's effectiveness is contested. We compared the industry's transparency of funding in four Nordic countries that, given their general reputation for high transparency, offered a critical test of self-regulation's ability to deliver on its transparency promise. For 2017–2019, we compared: national rules regarding funding disclosure; disclosure practices as evidenced by the availability, accessibility, and format of company transparency reports; and disclosure data, including payment descriptions and sums. Transparency problems differed in kind and magnitude between countries. In Norway and Finland, unlike in Sweden and Denmark, data on funding were difficult to access and analyze and sometimes seemed incomplete or missing. We explain that a key factor allowing for country differences is the freedom given to a country's pharmaceutical industry trade associations to form self-regulatory rules, provided they do not fall below the weak, European-level minimum requirements. Transparency could be improved by aligning rules and practices with the FAIR data principles: that is, corporate disclosures should be findable, accessible, interoperable, and reusable.

International comparison of pharmaceutical industry payment disclosures in the UK and Japan: implications for self-regulation, public regulation, and transparency

“…We examined disclosure practices suggested by to-date analyses of self-regulation [ 55 , 115 – 117 ]. First, the availability of disclosures, understood as the share of companies publishing disclosures within companies committing to disclosure rules.…”

“…Nevertheless, as such, public regulation not a panacea. Any legislation should be premised on a comprehensive international evaluation of disclosure rules , practices and data [ 24 , 46 , 55 , 175 ], including their unintended consequences [ 23 , 176 , 177 ]. One structured way of embedding the perspectives of HCPs, HCOs, patients, and members of the public into the policy proposals would involve developing a “theory of change” [ 178 ] capturing multifaceted relationships between disclosure, transparency, as well as the economic power of the industry and the state’s regulatory power [ 18 – 20 ].…”

“…One structured way of embedding the perspectives of HCPs, HCOs, patients, and members of the public into the policy proposals would involve developing a “theory of change” [ 178 ] capturing multifaceted relationships between disclosure, transparency, as well as the economic power of the industry and the state’s regulatory power [ 18 – 20 ]. In so doing, it is important to consider a range of potential goals of transparency, such as increasing the industry’s accountability to the public revealing potential FCOIs [ 21 , 24 , 26 , 55 , 106 ] and protecting the integrity of healthcare research or policymaking [ 20 , 146 , 179 ].…”

“…Disparate research designs have further constrained possibilities for systematic analysis of the uniqueness and commonalities relative to other cases, reducing generalisable international policy learning [ 30 , 31 , 38 ]. In addressing these limitations, we use a typology of dimensions of transparency developed in internationally comparative research on payments to patient organisations, an area of industry self-regulation separate from the scope of this article [ 55 ]. We examine three such dimensions: (1) the scope of payment disclosure rules established by the industry trade groups; (2) how payments are disclosed in practice ; and (3) the insight into industry-healthcare sector financial relationships generated by the payment data .…”

When consumers lose power: An examination of the stakeholder dynamics in the pharmaceutical industry

“…Therefore, these firms should be more likely to employ lobbying as the benefit can be disproportionally larger. It was found that lobbying helps pharmaceutical companies to expand access to novel drugs, instead of lowering prices which is clearly beneficial to consumers (Pashley et al, 2022). In addition, these firms tend to possess greater innovative capabilities and focus on products that are more novel in the current market.…”