The researchers call on NICE to review its disclosure policy to ensure that decision making committees are aware of all relevant interests.
An editorial suggests these findings contribute substantively to the broader picture of the influence of industry in patient organisations. It notes that international studies echo the findings, suggesting a substantial number of these organisations have potential financial conflicts of interest but limited disclosure practices. It adds that this current research add a valuable perspective by illuminating the role these conflicts of interest may play in government decision making on healthcare in England; substantiated by limited research on decision making by the US FDA and European Medicines Agency suggesting that this problem is unfortunately widespread.
The editorial expresses surprise that most patient organisations did not voluntarily disclose their potential conflicts of interests on Disclosure UK, online, or through the researcher’s follow-up inquiry and also concern about the policy of voluntary self- disclosure as a realistic or effective method of appropriately managing these organisations’ conflicts of interest. It adds that reviews of Disclosure UK, the database recording payments from companies in the ABPI to healthcare professionals and organisations, have shown that the recipients most likely to opt out are those receiving the largest payments, and thus the most likely to have substantial financial conflicts of interest. It calls on the UK to move towards mandatory disclosure as has happened in the US and several European countries to increase transparency, though it notes patient organisations are often not included in these disclosure laws, including those in the US. It concludes that “for NICE to better judge and interpret recommendations made by patient organisations, its policies must require disclosure in all circumstances and not just in the nomination of patient and clinical experts. Furthermore, NICE must ensure complete enforcement with compliance from all patient organizations.”