Health advocacy organizations and the lack of transparency

by Patrick Fitzgerald, MPH

Health advocacy organizations (HAOs) are typically organizations of prominent, trusted stakeholders who conduct campaigns to promote disease awareness, update members to new diagnostic tests and drugs, facilitate physician referrals, deliver health care services, and advocate for policies believed to be in their member’s best interest.

They range in size from national organizations with many thousands of members focused on widespread disease to smaller entities with a more narrowed focus.

A recent study in the American Journal of Public Health looked at the Lilly Grant Registry (of drug-maker Eli Lilly) – a record of the company’s grant awards – to specifically investigate grants provided to health advocacy organizations. This information was used: (1) to compare Eli Lilly’s grant giving and marketing goals, (2) to identify those HAOs receiving said grants, and (3) to examine the HAOs’ websites to discover their funding disclosure practices.

Grants from Eli Lilly to health advocacy organizations totaled $3,211,144 (10.2 percent of its total grant giving) with 94 percent of this given to HAOs active in Lilly’s three main therapeutic areas of interest (neuroscience, endocrinology, and oncology; representing 45, 31 and 11 percent of total sales respectively).  A break down of Eli Lilly awards to HAOs showed that 66 percent of grants went to 114 HAOs involved in neuroscience, 21 percent to 17 oncology HAOs and 8 percent to 6 HAOs involved with endocrinology.

Of 161 health advocacy organizations examined, only 25 percent of health advocacy organizations acknowledged Lilly funding anywhere on their website.  Eighteen percent acknowledged Lilly in their 2007 annual report, one percent mentioned Lilly on a corporate sponsor’s page, and ten percent reported Lilly as the sponsor of a grant event recorded in the Lilly Grant Registry. This reporting varied significantly by therapeutic area of interest with HAOs involved in endocrinology and oncology disclosing at a higher rate than those involved in neuroscience.

Policy makers and the public at large need to remember that bias cannot be removed from a system with so many competing ambitions.  With every decision it is important to work through the evidence and agendas to consider the source of information as a potential source of bias. But exposing sources of bias requires transparency.

The evidence suggests that Eli Lilly targeted grants to specific health advocacy organizations in order to drive the profits of its commercial interests.  Yet these HAOs, through their lack of disclosure, withheld basic information regarding the funding stream powering their policy agendas.

Health advocacy organizations are entities that hold significant influence in the realm of health policy, on both a national and local level; they directly and indirectly affect how health care is delivered to patients.  This lack of transparency is concerning because neither policy makers, nor the public, can readily discern the relationship between an HAO and its grant sponsors to determine potential conflicts of interest between improving health and maximizing profits.  By extension, policy makers and the public are not fully aware of the source of information supplied to them.  Transparency by health advocacy organizations represents a vital component of the information that informs policy makers; this is akin to the transparency necessary between physicians and industry. It must be clear that the decisions of policy makers are in the best interest of the public, and not subverted to maximize the profits of private institutions.

Patrick Fitzgerald is a Project Manager at the Center for Chronic Disease Outcomes Research and blogs at Policy Prescriptions.

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  • Winslow Murdoch

    In an ideal world, the patients’ primary care office team functions as the best health advocate for their patient. This team already daily advocates (fights) with Medicare and insurers to allow specific medications or treatments as well as diagnostic studies to be covered financially. It also should be a trusted source for information as well as expert in local resource availability and credibility. Much of the current true work of advocacy is invisible to patients. It happens behind the scenes, as extra employees are added and thousands of hours are spent with your care team negotiating the
    Byzantine insurance system.

    The need for high volume patient care in order to cover
    overhead and a salary in insurance/Medicare/Aid driven
    primary care practice has mandated that your doctors’ office provides an ever increased amount of invisible patient
    advocacy as an unfunded service that is inefficient, demoralizing, and extremely expensive.

    Patients now feel the need to go outside their primary care team to find a resource that seems committed to them as individuals to provide more overt advocacy issues such as suggesting best specialists, regional centers for excellence, community resources etc.

    A good primary care team with whom you already have a trusted relationship ideally would be the best advocate, and i am sure most have ready access to a huge wealth of knowledge of resources valuable to you. Unfortunately, they are currently often up to their eyeballs in alligators with patient volume stress, and unfunded insurance red tape making them less approachable.

    This vacuum lends itself to third party health advocacy groups that are springing up as local cottage industries locally, and specific national disease specific groups as well.

  • http://www.myheartsisters.org Carolyn Thomas

    Here’s my cynical prediction for next year’s Eli Lilly grant announcements: 75% of the HAOs who got money this year from Lilly but didn’t mention the gift on their websites won’t be getting their grants renewed. Ditto for the 82% who didn’t mention the gift in their annual reports and the 90% who didn’t properly thank Lilly at their grant-funded events. As the U.K.-based World Advertising Research Centre explains: “Corporate social responsibility requires investment, and it yields measurable outcomes.” Without those ‘measurable outcomes’, the marketing dollars go elsewhere.

    As you correctly point out here, “Eli Lilly targeted grants to specific health advocacy organizations in order to drive the profits of its commercial interests.” Lilly and other corporate funders don’t shell out millions of dollars every year to HAOs out of the goodness of their hearts. This is a common “social cause marketing” strategy that’s good for the bottom line. I’m not sure who should be more upset by this report – Eli Lilly (whose cause marketing investment is not getting the acknowledgement that all cause marketing demands) or all of us patients, whose ignorance of corporate financial bias among our trusted advocacy organizations continues.

  • http://www.nationalheatlhcouncil.org Nancy Hughes

    Transparency is important in the operations of patient advocacy organizations, and the authors of the American Journal of Public Health article acknowledged in their piece that their search of patient advocacy organization websites was inadequate to conclude whether the groups disclose all financial support.

    The authors also failed to point out that all patient groups that are members of the National Health Council, the leading national organization for patient advocacy organizations, must meet and adhere to a Standards of Excellence® Certification Program (http://www.nationalhealthcouncil.org/forms/soe.pdf). The Standards clearly state that the member organization “must have a written board-approved policy that … MANDATES (emphasis added) the disclosure of financial support received as a result of the corporate relationship.”

    Nancy Hughes
    Assistant Vice President, Communications and Marketing
    National Health Council

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