American researchers have concluded that conflicts of interest are widespread in patient organisations, and that there are few signs of self-regulation in this sector. The question is whether this conclusion only applies to the US. An article in Gebu 2006; 40: 116 found that in 2005, about half of all patient organisations in the Netherlands were receiving some kind support from the pharmaceutical industry. At the time, only a minority of the patient organisations had formulated a formal policy on sponsoring by the pharmaceutical industry, and the article called for a ‘code of conduct’ which would require showing how funds were acquired, with active monitoring of compliance and options to impose sanctions.
The credibility and reliability of patient organisations is undermined by associating themselves with the pharmaceutical industry, as the industry’s interests usually do not parallel those of the patients they claim to represent.
The article has also been presented for comment to the Patiëntenfederatie Nederland (the federation of patient organisations in the Netherlands). The federation responded that they were currently updating their code of conduct for member organisations as regards the raising and use of external funds, and will present the revised version on its website in the coming months.
As there is already a transparency register for doctors, making it harder to influence these professionals, could it be that the industry is now turning its attention to patient organisations?
- O’Donnell J. Patient groups funded by drugmakers are largely mum on high drug prices. USA Today. January 21, 2016 (http://www.usatoday.com/story/news/nation/2016/01/21/patient-groups-drug-makers-high-drug-prices/79001722/).
- Rosenberg M. Bone associations funded by Big Pharma push questionable drugs on women. June 13, 2016 (http://www.theepochtimes.com/n3/2089469-bone-associations-funded-by-big-pharma-push-questionable-drugs-on-women/).
- McCoy MS, et al. Conflicts of interest for patient-advocacy organizations. N Engl J Med 2017; 376: 880-885.
*The literature refers to the Dutch text