Patient groups told to come clean
Health experts are calling for greater independence and transparency from industry-sponsored patient advocacy groups.
Patient advocacy groups are big players in healthcare, promoting favoured interventions and shaping public debate about disease.
But little is known about these organisations’ commercial interests and how they ultimately influence regulatory decisions and health choices.
Professor Lisa Bero from the University of Sydney argues that patient advocacy groups should be subject to the same level of scrutiny over conflicts of interest and misleading claims as other medical and pharmaceutical bodies.
“As more research is conducted into patient groups and their influence in medicine, the question remains – are they engaging in potentially deceptive practices by suggesting solutions which better serve the interests of their corporate sponsors, rather than what’s best for patients?” asked Professor Bero.
“The very way we think about disease is being subtly distorted because many of the ostensibly independent players, including patient advocacy groups, are largely singing tunes acceptable to companies seeking to maximise markets for drugs and devices.”
Australia has no national requirements for patient advocacy groups to disclose their funding sources or industry sponsorships, though some pharmaceutical companies do disclose payments to these organisations through Medicines Australia.
The experts say there is an increasing body of evidence suggesting bias in favour of funding sources when patient advocacy groups are sponsored by drug manufacturers and other device companies.
A recent survey of 439 patient organisations in the US found that two-thirds received some form of industry funding.
One in 10 reported half their funding was from industry, with the median amount $50,000, while approximately 10 percent of groups received $1 million annually – almost half of that from pharmaceutical and device companies.
Some of these groups even reported that they felt pressure from their sponsors to conform to their positions or interests.
“While there is ample evidence across medicine more generally showing that funding has the potential to bias research, education and practice, there is limited data on the possibility of similar associations between industry funding and advocacy group positions or activities,” Professor Bero says.
“In our view this new [research] demonstrates an urgent need for patient advocacy organisations to explicitly focus much more on representing the interests of patients and citizens, rather than serving – inadvertently or otherwise – the interests of their industry sponsors.”
Another new study from Johns Hopkins reveals that manufacturer-sponsored groups are more likely to oppose draft guidelines aimed at increasing regulation of opioid use (38 per cent) compared to those with no industry funding (six per cent).
“Thousands of patient advocacy groups in the United States are reliant on support from pharmaceutical or device industries, and at the system level the aggregation of this influence raises substantial concerns,” said Dr Ray Moynihan of Bond University.
“To ensure a healthier patient voice in medical research, education, policy and practice, sponsored groups that want to be seen as independent and credible need to decrease their industry sponsorship and ultimately disentangle – gaining in authority what they lose in resources.”