Re: Financial interests of patient organisations contributing to technology assessment at England’s National Institute for Health and Care Excellence: policy review
To the Editor:
Patient organizations exist to support and improve the lives of people with chronic diseases and disabilities. The article by Mandeville, Barker, Packham, Sowerby, Yarrow, and Patrick, “Financial interests of patient organisations contributing to technology assessment at England’s National Institute for Health and Care Excellence: Policy Review,” published on 16 January 2019, calls for stronger financial disclosure policies for patient organizations. The US-based National Health Council (NHC) and our patient advocacy organization members have been leading the way since 1998 in transparency and managing potential conflicts through our Standards of Excellence®.
In our Standards, we require patient organizations who are NHC members to publicly disclose any financial support they receive from life-science companies as they do on their US tax documents and/or as a percentage of their total revenue. They also must have a written agreement between a sponsor and the organization emphasizing mission-related benefits of the sponsored project that maintains the patient organization’s independence and control. In fact, this is something the NHC has required for decades. In addition, they must have a Board-approved corporate relations policy and provide public access to the organization’s Conflict of Interest policy via their website.
We welcome collaboration with and support from life-science companies and recognize these relationships must be transparent and with conflicts of interest appropriately managed. Patient advocacy organizations are driven by their missions – putting patients first. The NHC Standards of Excellence could be a model for other countries around the world.
Marc Boutin, JD
Chief Executive Officer
National Health Council
Washington, DC, USA
Competing interests: No competing interests