The need for greater transparency in patient advocacy

As medicine and healthcare have become such crucial parts of our lives, a number of patient-advocacy groups have emerged.  Such groups perform a number of roles, whether it’s promoting research or influencing government policy.

Their role is something I’ve explored previously, with an Australian study examining the role they play.  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.

A new study, led by researchers from the University of Pennsylvania, set out to explore the impartiality of such groups and came to a similar conclusion.  It suggests that they need to be more transparent, as many have undisclosed connections to the pharmaceutical industry.

“Our findings provide support for a new ‘sunshine’ law to oblige drug, device, and biotechnology companies to report the payments they make to patient organizations in the same way the must report payment to physicians and teaching hospitals,” the authors say. “Greater transparency would allow citizens, researchers, policymakers, and others to assess conflicts of interest of patient-advocacy organizations in a way that is not currently possible, and would make it easier for patient-advocacy organizations that accept little or no industry support to differentiate themselves from those that are heavily dependent on such support.”

A lack of transparency

The research saw over 100 patient advocacy groups examined via a combination of their websites and annual reports.  The researchers were especially looking for the level of industry funding such groups received.  Interestingly, the vast majority of advocacy groups received financial support from industry, with over 80% reporting this via their literature.  Indeed, just one of the groups studied explicitly stated that they didn’t accept funding from industry.

The figures are not insignificant either, with 39% of groups receiving over $1 million per year.  What’s more, the influence was not limited to finance, with over 1/3 of the groups having board members from industry, with 12 of the groups having industry executives in a leadership role.

Despite this apparent conflict of interest, just 12 of the groups had clearly published policies addressing this potential risk.

“What we’re seeing is that institutional conflicts of interest are the norm among larger patient-advocacy organizations, and that disclosure and management of these conflicts is limited,” the authors say.

They argue that this lack of transparency harms their objectivity, and therefore their effectiveness.  They should have more rigorous disclosure practices, whether in terms of the money they receive, or any other connections to the industry.

There have been previous attempts to mandate such transparency, but to date there have been no laws drafted to ensure this in patient advocacy groups.


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