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

OBJECTIVES

This study investigates the information and policies that Canadian patient groups post on their publicly available websites about their relationships with pharmaceutical companies.

DESIGN

Cross-sectional study.

SETTING

Canadian national patient groups.

PARTICIPANTS

Ninety-seven patient groups with publicly available websites.

INTERVENTIONS

Each 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 MEASURES

Number 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.

RESULTS

Fifty-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.

CONCLUSIONS

Pharmaceutical 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.