Pharmacy Daily | Advocacy transparency?

RESEARCHERS from the University of Sydney and Bond University are calling for more transparency around industry-sponsored patient advocacy groups.

In recent commentary they note that as patient advocacy groups become bigger players in healthcare, little is known about their potential commercial interests - especially as there's no national requirement for them to disclose their funding sources.

"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," Professor Lisa Bero from the University of Sydney Pharmacy Faculty said.

She says the very way we think about disease is being "subtly distorted" with some patient advocacy groups "singing tunes acceptable to companies seeking to maximise markets for drugs and devices".

Some studies have been conducted in the area including new research by Dr Susannah Rose from the US Cleveland Clinic.

When looking at 439 patient organisations the study found that two-thirds of them received some form of industry funding.

It found the median amount of funding sat at $50,000, while 10% of groups received $1 million annually.

"Thousands of patient advocacy groups in the US are reliant on support from pharmaceutical or device industries, and at the system level the aggregation of this influence raises substantial concerns," Dr Ray Moynihan of Bond University's Centre for Research in Evidence-Based Practice said.

He suggested groups that wanted to be seen as independent should decrease their industry sponsorship and "gain in authority what they lose in resources".

Currently in Australia some pharmaceutical companies voluntarily disclose payments to patient advocacy groups through Medicines Australia.