Abstract
BackgroundMuch like academic-industry partnerships, industry financial support of patient advocacy organizations (PAOs) has become very common in recent years. While financial conflicts of interest (FCOI) between PAOs and industry have received more attention in recent years, robust efforts to mitigate these conflicts are still limited.Main bodyThe authors outline the possible benefits and ethical concerns that can result from financial interactions between biomedical companies and PAOs. They argue that the use of novel strategies, such as the creation of a standing ethics committee, could be helpful in managing FCOIs and ensuring the warranted trust of PAO’s constituents. Although ethics committees to address FCOIs are common in the academic context, its use by PAOs is still limited. The authors conclude by describing the process of development and implementation of such an ethics committee at the Crohn’s & Colitis Foundation.ConclusionsWhile collaborations with industry can result in conflicts of interest, PAOs can develop strategies to address those conflicts. One such strategy is the creation of a standing independent ethics committee to guide PAOs on new and/or existing programs and protocols as they pertain to their industry relationships.
Highlights
Much like academic-industry partnerships, industry financial support of patient advocacy organizations (PAOs) has become very common in recent years
One such strategy is the creation of a standing independent ethics committee to guide PAOs on new and/or existing programs and protocols as they pertain to their industry relationships
When assessing the risks and benefits of PAO involvement with industry, it is important to take into account the risk that conflicts might bias PAO’s various advocacy activities, and the risks that perceptions of bias, whether present or not, can lead to a loss of trust in the PAO. In spite of these concerns, some evidence suggests that PAOs might not be attending sufficiently to the problems that arise when they enter into financial relationships with biomedical companies [13, 15, 16, 19, 20, 32, 33]. Few of these organizations have published financial conflicts of interest (FCOI) policies, which does little to assuage the possible worries that patients, families, healthcare institutions, public agencies, and the public might have regarding the ability of PAOs to promote their primary missions
Summary
The committee recommendations attend to the need to promote the welfare of patients and nurture the warranted trust of relevant stakeholders, while acknowledging the legitimate needs of the Foundation to collaborate with industry to advance its mission This is important for PAOs to keep in mind as they establish the guiding principles of their ethics committee and the process by which they review submissions. The Foundation staff who advance the research, education, support, and advocacy activities are strongly committed to promoting the interests of patients, caregivers, and relevant stakeholders and protecting the trust that they place in the organization They have embraced the ethics committee and they welcome the opportunity to bring issues to it.
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