Researchers from the University of Sydney and Bond University are urgently calling for greater independence and transparency around industry-sponsored patient advocacy groups, amid questions over potential bias in their activities.

Patient advocacy groups are becoming bigger players in healthcare, promoting certain interventions and shaping public debate about disease more broadly. Yet, little is known about how these organizations’ commercial interests ultimately influence regulatory decisions and patients’ health choices.

In commentary published in JAMA Internal Medicine, researchers argue 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 companies.1 They are concerned that some patient groups may be engaging in potentially deceptive practices by suggesting treatments and therapies which better serve the interests of their corporate sponsors, rather than what may be best for patients.

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The researchers contend that the way a disease is viewed can become subtly distorted because many of the ostensibly independent players, including patient advocacy groups, are catering to drug companies seeking to maximize markets for drugs and devices. The authors of the invited commentary stated there is ample evidence across medicine more generally showing that funding has the potential to bias research, education, and practice.  However, they authors explain that there are limited data on the possibility of similar associations between industry funding and advocacy group positions or activities.


1. Moynihan R, Bero L. Toward a healthier patient voice: more independence, less industry funding. JAMA Intern Med. 2017 Jan 17. doi: 10.1001/jamainternmed.2016.9179 [Epub ahead of print]