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NICE: Opaque patient groups and industry fees raise concerns over conflicts of interest

A study published by the BMJ in January 2019 examined industry funding for 53 patient organisations contributing to 41 NICE technology appraisals during 2015-2016. The team found that on 79% occasions that patient organisations contributed to appraisals in 2015 and 2016, they had accepted funding from the manufacturer(s) of a technology or a competitor product in the same year that they had contributed to the appraisal of that technology, or the previous year.

Current NICE policy requires individuals to declare any money or grants they have received, but does not require the patient organisation itself to reveal its funding. Most patient organizations assessed had not voluntarily disclosed their potential conflicts of interests on Disclosure UK, online, or in response to direct enquiries.

NICE’s decision making committees were aware of only 21% of these specific interests.

For nearly two thirds of these unrecognised specific interests, disclosure by patient organisations was not required by NICE’s policy. Scotland and France already have relevant mandatory disclosure rules in place, the lead author told the Guardian.

In an accompanying editorial, BMJ recommended that NICE policies should “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.” Noting that almost all of the nominated patient and clinical experts who declared financial conflicts of interest were selected to attend NICE committee meetings, the editorial concluded that: “Disclosure alone does not provide a robust enough safeguard to ensure public trust, and additional legislation and organizational policies are needed for all stakeholders to react in a meaningful way to the information disclosed.”

NICE responded that an ongoing review of its disclosure policies would take the study’s findings and recommendations into account.

NICE’s deputy chief executive told the Guardian that: “Ensuring that organisations and individuals declare potential conflicts of interests in accordance with our policies is central to how we develop guidance and is essential in maintaining public and professional confidence in our work.

In an unrelated development, NICE will start charging pharmaceutical companies for appraisals of their drugs in April 2019.

Some NHS organisations voiced fears that industry fees would give companies inappropriate influence over NICE. The government rejected these concerns, arguing that as companies will be charged before appraisals begin, NICE’s revenues will not be dependent on assessment outcomes. The move was preceded by a government consultation that drew 78 responses, 41 of which came from industry.

In April 2018, a Kaiser Health News investigation had found that pharmaceutical companies gave at least $116 million to U.S. patient advocacy groups in a single year.

In parallel, KHN launched Pre$cription for Power, a database logging 12,000 donations from large publicly traded drugmakers to such organizations.

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