Re: Industry funding of patient and health consumer organisations: systematic review with meta-analysis
Patient organizations exist to support and improve the lives of people with chronic diseases and disabilities. The article (https://www.bmj.com/content/368/bmj.l6925) by Fabbri, Parker, Colombo, et al., “Industry funding of patient and health consumer organisations: systematic review with meta-analysis,” published online on January 22, 2020, highlights the importance of transparency and addressing potential conflicts of interest by patient organizations. The National Health Council (NHC) and our more than 60 patient-organization members (https://nationalhealthcouncil.org/members/?f_tax=41&f_key=) have been leading the way in transparency and managing conflicts for decades. Our Standards of Excellence® (Standards) (https://nationalhealthcouncil.org/standards-of-excellence/), which all our patient-organization members must meet, address governance, human resources, programs, fundraising, finance, accounting and reporting, transparency, conflict of interest, and evaluation. While our Standards are not mandatory for nonmembers, many organizations voluntarily follow them.
We would like to express several concerns regarding the study by Fabbri, et al., and accompanying opinion piece. Both fail to acknowledge that these voluntary standards already exist and have been in place for over 10 years, and that many legitimate patient groups adhere to them. Failing to acknowledge their existence and to attempt stratify the analyses by groups that follow them versus groups that do not, is a missed opportunity to highlight the impact the standards can have.
The NHC Standards require patient-organization members to publicly disclose (typically on their website) the name of each life-science company sponsor and the amount of financial support identified on their tax Form 990 and/or the total amount of corporate support as a percentage of total revenue. They also are required to have a written agreement with any life-science company prior to entering a relationship; that agreement must ensure the organization maintains its independence and control, and ensures the funds received provide a direct mission-related benefit. In addition, they must publicly disclose their board members and make their Conflict-of-Interest policies available via their website.
It also seems that the study conflates true patient organizations with “astroturf,” or fake, advocacy organizations (https://medium.com/@cleodan/astroturf-lobbying-technically-legal-ethical...). It does not appear a differentiation was made between them in this study or in the studies included in the analysis. This is an important differentiation. The principles embedded in the NHC Standards could be used as a guide to help differentiate “astroturf” patient groups from mission-driven organizations that strive to put patients first. To imply otherwise, negates the extraordinary work achieved by these organizations on behalf of patients.
In analyzing the relationships between industry and patient organizations, we must exercise caution so that we do not paint all “patient” groups with the same brush and minimize the valuable, mission-driven work of true patient advocacy organizations.
Marc M. Boutin, JD
Chief Executive Officer
National Health Council
The National Health Council is a stakeholder-informed, patient-focused organization that forges consensus among diverse organizations and drives patient-centered health policy. For more information, visit our website at www.nationalhealthcouncil.org.
Competing interests: No competing interests