National patient groups in Canada and their disclosure of relationships with pharmaceutical companies: a cross-sectional study

Abstract

ObjectivesThis study investigates the information and policies that Canadian patient groups post on their publicly available websites about their relationships with pharmaceutical companies.DesignCross-sectional study.SettingCanadian national patient groups.ParticipantsNinety-seven patient groups with publicly available websites.InterventionsEach patient group was contacted by email. Information from patient groups’ websites was collected about: total annual revenue for the latest fiscal year, year revenue was reported, revenue from pharmaceutical company donors, purpose of the donation, presence of donors’ logos on the website and hyperlinks to donors’ websites, previous and current employment information about board members and staff, external audits about the group’s finances and whether the group endorses products made by donors. Analysis of publicly available policies looking at: board and/or advisory board, acceptance of donations and revenue generation, independence of decision-making, endorsements, assistance to and/or interactions between patient members from a donor or another company/person acting on behalf of a donor and audits/monitoring/compliance.Primary and secondary outcome measuresNumber of patient groups posting information on their websites about their relationships with pharmaceutical companies; the presence and contents of patient group policies covering different topics about relationships with pharmaceutical companies.ResultsFifty-three (54.6%) of 97 groups reported donations from pharmaceutical companies. Forty-one (42.3%) groups showed the logos of pharmaceutical companies on their websites and 22 (53.7%) had hyperlinks to pharmaceutical company websites. Twenty-five (25.8%) of these groups endorsed pharmaceutical products produced by brand-name companies that had donated to the groups. Twenty-six (26.8%) groups had policies that dealt with relationships with pharmaceutical companies.ConclusionsPharmaceutical industry funding of the included patient groups was common. Despite this, relatively little information was provided on patient group websites about their relationships with pharmaceutical companies. Only 26 out of 97 groups had publicly available policies that directly dealt with their relationships with pharmaceutical companies.

Industry funding of patient organisations in the UK: a retrospective study of commercial determinants, funding concentration and disease prevalence

“…55 Even for companies that are signatories of the ABPI Code, under-reporting of payments to patient organisations and removal of disclosure reports from the public domain has been observed. 13 56 57 Second, in our assessment of company interests, we made a conservative assumption that only patient organisations which target relatively narrow conditions were eligible to be coded as definitely ye s. Despite this assumption, we concluded that more than half of payments were in therapeutic areas in which companies had a clear interest. Finally, our analysis focused on a recent though limited time period.…”

“…Given the increasingly important role of patient organisations it is vital to understand their financial ties with pharmaceutical companies. Previous studies documented the large number and high value of payments from pharmaceutical companies to patient organisations,2 8–10 the uneven distribution between and within therapeutic areas,2 10 and the concentration of payments coming from a small number of pharmaceutical firms across multiple jurisdictions 2 8–16…”