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Greater transparency in reporting of industry funding of patient groups

Strategies needed to prevent biases that could favour corporate over patient interests, experts say

Ingrid Torjesen

Thursday, 23 January 2020

Industry funding of patient groups is common in many high-income countries, but few patient groups have formal policies that govern corporate funding and financial transparency is inadequate, experts writing* in The BMJ have warned. They say strategies are needed to prevent biases that could favour the interests of sponsors above those of the public.

Patient groups often rely on multiple sources of financial support, including the pharmaceutical and medical device industries, but concerns have been raised about conflicts of interest and potential threats to the integrity and independence of groups.

Researchers analysed the results of 26 observational studies looking at funding of patient groups. Most included patient groups from multiple disease areas and were conducted in high-income countries, primarily the United States and Europe.

They found that, in general, industry funding of patient groups was common with estimates ranging from 20% to 83%. Among groups that received industry funding, around a quarter (27%) disclosed this information on their websites between 2008 and 2012, and the authors noted that disclosure of financial relationships might have increased since that time period.

The proportion of patient groups with formal policies that governed corporate sponsorship ranged from 2% to 64%.

The few studies that assessed the link between organisational positions and funding, suggest that industry funded groups tended to support sponsors' interests, but the authors say this finding should be interpreted with caution.

"Greater transparency in reporting of industry funding, and policy development to govern corporate sponsorship are steps that are clearly needed and easy to implement," the researchers wrote. "In the long-term, we would recommend a broader discussion about industry funding in the patient group sector, among patient groups themselves and in the wider society, and exploration of alternate funding mechanisms."

In a linked editorial** Susannah Rose, associate chief experience officer and director of research at the Office of Patient Experience and Center for Bioethics, Cleveland Clinic, Cleveland, Ohio in the US, said that the findings "provide yet more evidence that conflicts of interest between patient groups and industry are extensive and run deep."

Voluntary disclosure is not working and it is time for mandatory disclosure, she added: "Only then can stakeholders explore how best to respond to disclosed information and develop additional legislative safeguards as needed to fortify public trust."

*Fabbri A, Parker L, Colombo C, et al. Industry funding of patient and health consumer organisations: systematic review with meta-analysis. BMJ 2020; 368 :l6925

**Bruno B, Rose S. Corporate sponsorship of patient groups. BMJ 2020; 368 :m168

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