Background: patients and consumers have become influential key players in multiple areas of healthcare research. They are involved in the conduct of systematic reviews, guideline development, health policy, and drug approval. Similar to other stakeholders, some of these groups may receive funding from the pharmaceutical industry, which creates situations of conflicts of interest (COI).
Objective: to summarize the available evidence on the financial relationships between the pharmaceutical industry and patient and consumer representatives and their organizations.
Methods: studies reporting on COI of patient or consumer representatives, or on the funding of their organizations were eligible. We systematically searched MEDLINE and Embase up to July 2018 without restrictions on language, study design or date of publication. In addition, we performed backward and forward citation tracking (up to March 2019). Teams of two review authors selected studies and abstracted data in duplicate and independently. We reported on outcomes related to both funding (e.g. proportions receiving funding) and COI (e.g. disclosed and undisclosed COI).
Results: we identified a total of 14,497 unique citations, of which 25 met our inclusion criteria. The majority of the included studies addressed funding or COI, or both, in patient and consumer organizations (88%), while few studies (12%) addressed COI of patient and consumer representatives.
Most of the studies about patient and consumer organizations were surveys of organizations’ websites (55%), mainly in Europe (36%) and North America (32%). Twelve studies (55%) assessed the proportion of organizations that received funding from the pharmaceutical industry; the median proportion was 71% (interquartile range (IQR) 46% to 79%). Five studies (23%) assessed the proportion of organizations that acknowledged receiving industry funding; the median proportion was 28% (IQR: 25% to 37%). Studies also reported on funding/COI policies of organizations (45%); the median proportion was 26% (IQR: 18% to 52%).
All of the three studies addressing COI of patient and consumer representatives were about public speakers at the Food and Drug Administration (FDA) drug advisory committee meetings. None was in the context of research or guideline development. Two studies examined the proportion of total COI (disclosed and undisclosed), which was 25% and 19% in each study; and one study examined only the proportion of disclosed COI, which was 32%.
Conclusions: the issue of financial relationships between the pharmaceutical industry and patient and consumer representatives and their organizations is on the rise. There is a legitimate need for regulatory efforts requiring disclosure and management of financial ties between the pharmaceutical industry and patient organizations to ensure the transparency of such relationships.
Patient or healthcare consumer involvement: none