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

Pashley, Dylan LU ; Ozieranski, Piotr and Mulinari, Shai LU (2022) In International Journal of Health Services 52(3). p.347-362
Abstract
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,... (More)
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. (Less)
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author
; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
International Journal of Health Services
volume
52
issue
3
pages
347 - 362
publisher
Baywood Publishing Company, Inc.
external identifiers
  • scopus:85125477668
  • pmid:35230175
ISSN
1541-4469
DOI
10.1177/00207314221083871
project
Following the money: cross-national study of pharmaceutical industry payments to medical associations and patient organisations
language
English
LU publication?
yes
id
793fc4e4-22d0-4130-b533-8ecde7394e1f
date added to LUP
2022-01-11 09:52:37
date last changed
2022-11-08 07:16:09
@article{793fc4e4-22d0-4130-b533-8ecde7394e1f,
  abstract     = {{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.}},
  author       = {{Pashley, Dylan and Ozieranski, Piotr and Mulinari, Shai}},
  issn         = {{1541-4469}},
  language     = {{eng}},
  month        = {{03}},
  number       = {{3}},
  pages        = {{347--362}},
  publisher    = {{Baywood Publishing Company, Inc.}},
  series       = {{International Journal of Health Services}},
  title        = {{Disclosure of Pharmaceutical Industry Funding of Patient Organisations in Nordic Countries: Can Industry Self-Regulation Deliver on its Transparency Promise?}},
  url          = {{https://lup.lub.lu.se/search/files/114731662/00207314221083871.pdf}},
  doi          = {{10.1177/00207314221083871}},
  volume       = {{52}},
  year         = {{2022}},
}