EXECUTIVE SUMMARY
Recent studies have revealed surprising financial ties of patient advocacy organizations: the vast majority receive financial support from drug, device, and biotechnology companies. Some ethical concerns include the following:
- Very few organizations indicated how donations were used.
- Some leaders felt pressured to conform their positions to the interests of corporate donors.
- Groups lack resources to improve conflict of interest policies.
Physicians’ financial ties to industry are well-known and now publicly available — but less attention is paid to industry funding of patient advocacy organizations. Two recent studies examined these ties, with similar findings.
One study revealed that more than 80% of 104 large patient advocacy organizations receive financial support from drug, device, and biotechnology companies. Additionally, industry executives often serve on governing boards.1
“Going into the study, we knew that some patient advocacy organizations received support from drug and device companies. But we were surprised at how ubiquitous these sorts of relationships were,” says Matthew McCoy, PhD, the study’s lead author and a postdoctoral fellow at the University of Pennsylvania’s Perelman School of Medicine.
The researchers also were struck by the limited transparency around this funding. Most organizations provided a list of their donors, but only 57% also included the amounts of individual donations. Most of those disclosed donation amounts using broad ranges, such as “between $100,000 and $200,000,” instead of exact figures. Very few organizations indicated how donations were used.
“From the perspective of someone trying to assess the severity of a patient advocacy organization’s financial conflicts of interest, the information that’s out there is, in most cases, insufficient,” McCoy says.
Most ‘Full of Integrity’
Another group of researchers surveyed 289 patient advocacy organizations about financial relationships with industry, with 67% reporting receiving industry funding. Nineteen received more than half of their funding from industry.2
Twenty-two patient advocacy organization leaders perceived pressure to conform their positions to the interests of corporate donors. Susannah Rose, PhD, the study’s lead author and scientific director of research at the Cleveland Clinic’s Office of Patient Experience, reports, “A much larger percentage of patient advocacy organizations receive money from for-profit industry than we anticipated.”
The researchers also examined the perceived effectiveness of conflict of interest policies. Not many leaders saw theirs as particularly effective. “Leaders thought they could be strengthened,” says Rose. “Many are interested in this issue. They really want help in dealing with conflicts of interests.”
However, many lack the necessary resources and knowledge to effectively address this. Some groups have only a handful of staff members. “Most of the organizations are full of integrity. They want to do the right thing,” says Rose, who authored a recent paper on how to improve conflict of interest policies at academic medical centers.3 She offers the following ways in which patient advocacy groups can tackle the issue:
• Groups can simply stop taking money from industry.
This is a realistic possibility for organizations that take relatively low amounts of money from industry. “Some take a lot, but there is a good number that aren’t fully reliant on industry,” notes Rose.
• Groups can be more transparent about the funding they receive.
Both studies showed that information on industry funding is not usually readily available on the group’s websites.
As a psychotherapist at Memorial Sloan Kettering, Rose routinely referred her patients to advocacy organizations. Many provided counseling services and gave advice on various treatment options and drugs. “I was shocked, to be honest, to find out that many are highly funded by the pharmaceutical companies,” she recalls. While that wouldn’t necessarily have discouraged Rose from making referrals to the groups, she found it disconcerting that the information wasn’t more readily available.
In McCoy’s view, to the extent that patient advocacy organizations do have financial conflicts of interest, they ought to be as transparent as possible about it. “Knowing how severe they are and how they’re managed allows their constituents and the broader public to draw their own conclusions about the credibility of the organization,” he explains.
The Physician Payments Sunshine Act requires drug and device companies to report payments to doctors. These payments are readily searchable in the Centers for Medicare & Medicaid Services’ Open Payments database. No such requirement exists for patient advocacy groups.
The researchers argue that the requirement for mandatory reporting should be extended to cover industry payments to patient advocacy groups. “We aren’t the first ones to make this suggestion,” says McCoy. The Institute of Medicine (IOM) recommended this in a 2009 report.4 However, that recommendation was not incorporated into the Affordable Care Act.
“Given our research, and the work of others which now shows how ubiquitous industry support of patient advocacy organizations is, we think it’s time to revisit the IOM’s recommendation,” says McCoy.
Undue Influence Possible
McCoy is concerned that industry funding could influence patient advocacy organizations to act in ways that advance the interests of industry funders, but aren’t aligned with the interests of their constituents.
“This isn’t to say that accepting industry funding necessarily leads to undue influence. But it’s a risk factor for such influence,” says McCoy. The groups are claiming to act on behalf of a particular patient population. Thus, says McCoy, “it’s incumbent upon that organization to minimize threats to the integrity of its mission.”
Rose sees advocacy groups as unique and distinct in some ways. “Professional organizations, hospitals, and doctors usually have a very important, but narrower, role to play,” she explains. “You don’t see them having their hands in all aspects of health.”
Not only do advocacy groups have direct access to patients, but their influence also reaches all the way up to Congress and the FDA. “The groups are usually very trusted, and try very hard to advocate for the population they represent,” says Rose. “But they fall under the radar in terms of their relation with industry.”
Industry funding is not necessarily a bad thing, says Rose — in fact, it can be crucial to support the mission of advocacy groups. “On the other hand, they don’t want to be beholden to funders’ interests,” she says. “This is a classic ethical issue for organizations to grapple with.”
REFERENCES
- McCoy MS, Carniol M, Chockley K, et al. Conflicts of interest for patient advocacy organizations. N Engl J Med 2017; 376:880-885.
- Rose SL, Highland J, Karafa MT, et al. Patient advocacy organizations, industry funding, and conflicts of interest. JAMA Intern Med 2017; 177(3):344-350.
- Rose S. A new survey to evaluate conflict of interest policies at academic medical centers. PLoS ONE 2017; 12(3):e0172472.
- IOM (Institute of Medicine). 2009. Conflict of interest in medical research, education, and practice. Washington, DC: The National Academies Press.
SOURCES
- Matthew McCoy, PhD, Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania. Email: [email protected].
- Susannah Rose, PhD, Scientific Director of Research, Office of Patient Experience, Cleveland (OH) Clinic. Email: [email protected].
Recent studies have revealed surprising financial ties of patient advocacy organizations: the vast majority receive financial support from drug, device, and biotechnology companies.
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