Are patient groups really focused on the patient?

The breadth of innovation in the healthcare industry has been something I’ve commented on a number of times, whether it’s novel technologies emerging from startups and academics, fascinating projects from big companies, or more systemic changes around data and so on.

With the relentless pace of change, it can be difficult for healthcare groups to keep on top of things, but it can also be difficult for patients to ensure their voices are heard.

A recent paper from the University of Sydney and Bond University examined the role patient groups play in healthcare innovation, and especially that of those sponsored by industry groups.

Bias inherent in the system

The paper argues that patient advocacy groups are playing a growing role in the evolution of healthcare, both in promoting interventions and shaping the public debate.  Alas however, they argue that relatively little is known about the commercial entities that support and influence these groups.

“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?” the authors say.

“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.”

Operational guidance

In Australia, such groups are largely left to their own devices, with no real requirements for them to be transparent in regards to their funding or supporters.  The paper suggests that a growing number of patient groups are being funded by drug companies, thus bringing into dispute their impartiality.

“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,” the authors say.

The paper argues that many patient groups have slipped away from their original purpose and have become servants for industry, whether explicitly or otherwise.  It would benefit patients significantly if such groups reverted to their original mission and represented the interests of their core stakeholder group.

“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,” the authors say.

“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.”


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