“I think that there has been a naivety about industry funding” for patient groups, Dr Mintzes said. “The interests of patients and industry sponsors are not identical. Sometimes a drug ends up being more harmful than helpful; sometimes it’s incredibly expensive and no more effective than cheaper alternatives. Patient groups need to be free to be critical when that is the most appropriate way to support their members’ interests, as well as being enthusiastic about a new treatment if it really does lead to better outcomes and has been priced affordably.”

The study authors found that the association between principal investigators’ financial ties to the pharmaceutical industry on positive study outcomes was “independent of whether the company had also sponsored the study,” Dr Mintzes noted.1

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Overall, principal clinical trial investigators who receive drug industry funding were about 3.5 times as likely to find positive results as trials led by scientists who did not receive industry payments — even if a study is not itself industry-funded.

“The effect was strongest if the company funded the study and the researchers had conflicts of interest — around 5 times the likelihood of a positive result as other studies,” Dr Mintzes emphasized.

A “real strength” of this study was that the authors used the information declared by companies under the US Physician Payments Sunshine Act and the U.S. Patent Office to “obtain more complete information on conflicts of interest than authors had declared in their articles,” Dr Mintzes noted. “Of the 231 authors with financial ties to companies, 15% had not reported multiple types of financial ties.”

A recent study of patient advocacy organizations was “also very important,” Dr Mintzes said. The authors of that study reported that two-thirds of patient groups had drug company, medical device, or biotech industry funding. For more than half of the advocacy groups studied, at least 45% of their funding came from industry.2

“Patient groups play a very influential role in health policy, from providing information and advice to individual patients to representing patient interests in the media and on many committees and submissions to government,” she explained.

A further problem is that journalists do not always mention industry funding when quoting patient group representatives — even if they’re addressing a donor’s drug or a regulatory or policy issue that could directly affect the companies who help fund them, Dr Mintzes added.

Patient advocacy groups are “positioned to play a larger role in the FDA [U.S. Food and Drug Administration] approval process with the passage of the 21st Century Cures Act, making it even more important for their ties to pharmaceutical and device companies to be known and factored in when weighing their input,” Dr Sinha said.

There’s no easy way around the problem. Patient advocacy groups should maintain independence by refusing industry funding from companies that sell medicines or products for the patients these groups represent, Dr Mintzes believes.