Patient advocacy organisations should declare funding sources


A leading Sydney pharmacologist has called for greater transparency in the funding sources for patient advocacy organisations in Australia.

The call comes after growing concern about the influence some funding sources, particularly for-profit companies like the pharma sector, could be placing undue influence on the patient advocacy organisations (PAOs) they support.

Professor Lisa Bero, Professor at the University of Sydney’s Faculty of Pharmacy, and Chair, Medicines Use and Health Outcomes, Faculty of Pharmacy and Charles Perkins Centre, contributed a commentary to a series of articles on conflict of interest in the JAMA Internal Medicine Journal (see here, here, here and here).

“Patient advocacy groups play an increasingly powerful role in health care, sponsoring research, producing or promoting guidelines, driving media coverage, influencing regulatory decisions, promoting certain interventions, and shaping the way we think about disease,” she and co-author Ray Moynihan, Senior Research Assistant at Bond University’s Faculty of Health Sciences and Medicine wrote.

“Just as the industry funding of clinical trials has been associated with more favourable findings, patient groups also face risks of bias when accepting money from companies seeking to expand markets for their new tests and treatments.”

Speaking to the limbic, Professor Bero said little was known about funding sources in Australia for PAOs as there was no statutory requirement for them to declare their sponsors. She said there were some groups that make voluntary declarations, but this was far from across the board.

“I think all funding should be declared,” she said. “It’s been an uphill battle trying to get the level of disclosure we need. I think it’s a very big concern because I think patient groups play a very important part in health care and health policy.”

Citing one of the papers in the JAMA issue, Professor Bero and Mr Moynihan highlighted the depth of entanglement between PAOs and for-profit companies in the US.

“Two-thirds of groups reported receiving some industry funding, one in 10 reporting half their funding was from industry – defined in this study as any for-profit companies,” they wrote.

“Among groups accepting industry funding, the median amount was $50,000, with approximately 10% taking over $1 million annually – almost half of that from pharmaceutical and device companies.

“With rare candor, a small proportion of groups perceived “pressure to conform its positions to the interests of corporate donors or partners.”

They conceded that the study could not address the question of whether industry funding was associated with a bias; however the paper’s authors did raise concerns about the independence of groups receiving large amounts of money.

“While there is ample evidence across medicine more generally showing that funding has the potential to bias research, education and practice, there are limited data on the possibility of similar associations between industry funding and advocacy group positions or activity,” Professor Bero and Mr Moynihan wrote.

However, they said the results of a small new study also published in the JAMA issue, sounded alarm bells.

This US-based study examined submissions from 158 organisations that commented on a draft guideline addressing concerns about the sharp increase in the use of opioids for chronic, non-cancer pain, looking at both their comments and funding sources.

“While most of the professional and patient groups supported the new Centers for Disease Control and Prevention (CDC) draft guidelines, including groups funded by opioid manufacturers, opposition was much more common among groups with funding from the manufacturers when compared with whose with no industry funding: 38%v6%,” reported Professor Bero and Mr Moynihan.

“In addition, the study found that of the 45 groups receiving funding from manufacturers, none disclosed their funding in comments to the CDC.”

Professor Bero told the limbic that she would like to see ‘complete transparency’ in funding source disclosure from all Australian PAOs, but also hoped it could be taken a step further to reduce potential conflicts of interest.

“I think all the funding should be pooled and shared between the organisations,” she said. “Pooling the funding dilutes the influence.”

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