The murky world of industry sponsored ‘health consumer’ groups

Representing the interests of health consumers such as patients, their family and carers, health consumer organisations play an influential role in health care policy. Being non-profit, they tend to rely on external sources of financing – including from the pharmaceutical industry.

Recent studies from the US and Europe have demonstrated industry funding of health consumer organisations is common, but disclosure remains incomplete – and there are rising concerns around potential conflicts of interest and influence on consumer groups’ activities and positions.

New research led by the University of Sydney reveals a similar situation in Australia, with inadequate financial transparency among industry-funded consumer organisations and only rare instances of policies that govern corporate sponsorship.

Published in Australian Health Review today, the research is a collaboration between the University of Sydney’s Charles Perkins Centre and School of Pharmacy, part of the Evidence, policy and influence collaborative.

The research team identified 230 health consumer organisations that received pharmaceutical industry support from 2013 to 2016, using reports published by industry trade association Medicines Australia. Since 2013, Medicines Australia has published annual reports from member pharmaceutical companies with the monetary or in-kind value of sponsorship included.

Randomly selecting 133 from this group of consumer organisations, the team separately assessed their websites for financial transparency, policies governing corporate sponsorship and evidence of potential industry influence.

Of the 130 that received financial rather than in-kind support, 68 organisations (52 percent) disclosed their funding from industry, with a sliding scale of those reporting their industry donors’ identities (67 organisations or 98.5 percent), uses (53 percent), amounts (13 percent) and the proportion of income from industry (4 percent).

Just 24 of the 133 organisations had publicly available policies on corporate sponsorship; six organisations had board members currently or previously employed by pharmaceutical companies; and 49 featured industry company logos, web links or advertisements on their websites.

Lead author Edith Lau, a recent graduate at the University of Sydney School of Pharmacy, said the research was vital to shine a light on how Australian health consumer organisations manage their relationships with pharmaceutical companies.

“The relationships between Australian health consumer organisations and the pharmaceutical industry are clearly many and varied – but the ability to verify and assess these relationships is limited.

“A public debate is needed on how to ensure these organisations maintain their independence, with greater transparency a fundamental first step so anyone who visits an organisation’s website can find out if the group receives pharmaceutical industry funding.”

Co-author Dr Alice Fabbri, a postdoctoral research fellow in the School of Pharmacy based at the Charles Perkins Centre said action to maintain the independence of health consumer organisations was also required.

“Robust conflict of interest policies are needed to minimise the risk of undue influence, and consideration should be given to a stronger policy option that some organisations have already implemented – disengaging entirely from industry support.

“While this study was unable to examine industry influence on organisations’ positions, recent studies from the United States indicate undue influence can occur, and certainly a few of the organisations in our study had board members employed by drug companies and over a third had company advertisements or logos on their websites.

“The Australian government could also consider regulating non-profit organisations to ensure public reporting of funding sources, as is required in the US.”