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

Pharmaceutical companies regularly fund patient organisations. It is important for patient organisations’ credibility that there should 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 analyse, 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: i.e., corporate disclosures should be findable, accessible, interoperable, and reusable