Patient advocacy groups should be forced to declare their commercial funding, with a growing body of evidence raising serious concerns over conflicts of interests, Australian experts say.
Health consumer groups have become powerful global players in healthcare, capable of promoting certain interventions, steering research funding and shaping public debate from a public platform of altruism.
![Professor Lisa Bero warns that patient advocacy groups may be influenced by big pharma money.](/web/20170120092054im_/http://www.smh.com.au/content/dam/images/g/s/6/l/y/a/image.related.articleLeadwide.620x349.gtsyav.png/1484687438180.jpg)
Yet the sources and the amounts of funding they receive from pharmaceutical companies and other interest groups is largely hidden.
There is an urgent need for patient advocacy groups to undergo the same level of scrutiny as pharma companies and medical institutions, Dr Ray Moynihan at Bond University and Professor Lisa Bero at the University of Sydney wrote in JAMA Internal Medicine, published on Wednesday.
![Dr Ray Moynihan is pushing for greater transparency over the partnerships between patient advocacy groups and their ...](/web/20170120092054im_/http://www.smh.com.au/content/dam/images/g/j/4/c/9/s/image.related.articleLeadwide.620x349.gtsyav.png/1484687438180.jpg)
"It is indisputable that industry and its tests and treatments are vital components of the health care system … On the flip side, there is no doubt that industry funding can distort the patient voice," they wrote.
"The very way we think about disease is being subtly distorted by ostensibly independent players, including patient advocacy groups, who are largely singing tunes acceptable to companies seeking to maximise markets for drugs and [medical] devices," Professor Bero said.
The public ostensibly believes these groups are speaking for patients, but in reality they could be the mouthpiece of a pharmaceutical company, she said.
The influence can be invisible, but fosters a sense that "one doesn't bite the hand that feeds it", she said.
She pointed to the pharma-funded patient advocacy groups who were mute when price-gouging sent the cost of Epipens skyrocketing in the US, and a drug company-funded patient advocacy campaign helped push through the approval of a controversial female sex drug that had been rejected three times.
An analysis of 439 patients' organisations found two-thirds accepted some form of industry cash, while one in 10 reported half their funding was from industry (on average about $US50,000).
Another 10 per cent received $1 million annually, almost half from pharmaceutical and medical device companies, found the survey led by US researchers at Cleveland Clinic also published in JAMA Internal Medicine on Wednesday.
Some of the groups admitted they felt pressure from their sponsors to back their interests.
A third paper published in the journal reported patient advocacy groups were more critical of plans to restrict opioid prescriptions if they received funding from opioid manufacturers.
Many corporate sponsors require advocacy groups to agree to sponsorship packages that guarantee they advertise the sponsors' products and promote their approved spokespeople, but these agreements are often confidential, Professor Bero said.
Yet while there is ample evidence showing funding potentially leads to bias in medical research, education and doctors' practice, there is scant research specifically concerning patient advocacy group funding.
"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?" Professor Bero said.
"More diagnosis and more treatment, use of newer meds are not always the best thing – but that's not in the market interests of pharmaceutical companies," she said.
In Australia, guidelines for pharmaceutical companies that enter into relationships with health consumer organisations were developed by Medicines Australia, the Consumers Health Forum of Australia and other stakeholders.
But Australia has no national regulations that would force patient advocacy groups to disclose their backers and industry sponsors.
Some pharmaceutical companies volunteer the information to Medicines Australia.
In 2015, 33 companies reported spending more than $9 million on health consumer advocacy groups in 2014.
Professor Bero and Dr Moynihan, who are currently investigating the role of corporate funding among Australian advocacy groups, recommended patient advocacy groups be made to publicly disclose their funding sources.