NICE, in Confidence: An Assessment of Redaction to Obscure Confidential Information in Single Technology Appraisals by the National Institute for Health and Care Excellence

Abstract

All data was taken from the website of the National Institute for Health and Care Excellence (NICE), and is in the public domain Key points for decision makers• A high level of redaction features in current NICE STA guidance -both for academic and commercial reasons, which also may be increasing over time • The level of redaction present is variable between STAs -in many cases leading to decisions which do not appear justified, and in others inadvertently revealing supposedly confidential discounts • An improvement is needed to the status quo to ensure appropriate redaction is applied so as not to undermine the transparency of health technology appraisal

Integrative Review of Managed Entry Agreements: Chances and Limitations

“…According to Ferrario & Kanavos (94), MEAs typically consist of "a set of instruments used to reduce the impact of uncertainty and high prices when introducing a new medicine", providing access to new typically higher priced, but considered cost-effective, technologies under pre-established conditions between both parties (67,94,97,116). Numerous terms have been used to describe such schemes, including risk sharing arrangements, risk sharing schemes, MEAs, managed entry schemes, performance-based risk sharing schemes, performance-based risk sharing arrangements, outcome-based MEAs, outcome-based contracting and patient access schemes (2,5,69,(95)(96)(97)104,(117)(118)(119)(120)(121)(122)(123)(124). These agreements or schemes typically use different methodologies to reduce uncertainties related to the technology, especially its value and budget impact, and are typically tailored to a given situation and country (95,121,122,125).…”

“…This is of critical concern among countries that rely on external reference pricing for their deliberations and where patient co-payments are based on list rather than discounted prices (57,139). Appropriate redaction of publicly available documents is one way forward in addition to growing calls for increased transparency (117,140,141). There are concerns though with appropriate incentives for pharmaceutical companies if prices continue to fall and there is price fixing at lower costs with increased transparency (142).…”

Evidence-Informed Deliberative Processes for HTA Around the Globe: Exploring the Next Frontiers of HTA and Best Practices Comment on "Use of Evidence-informed Deliberative Processes by Health Technology Assessment Agencies Around the Globe"

“…Of particular importance is whether the agencies transparently report their data, models, social value judgements, and if the information is made available in a language accessible to the public. 6 , 13 , 14 Moreover, to promote legitimacy, transparency is needed not only after decisions have been made but also throughout the HTA process.…”

The New and Non-Transparent Cancer Drugs Fund

“…Despite NICE stating that "Data that are likely to be fundamental to the appraisal committee's decision-making cannot be marked as confidential (for example, the incremental cost-effectiveness ratio estimates)" 9 , access to this information is inconsistent through the use of variable redaction practices 10 to protect undisclosed price discounts. As a consequence, neither NHS hospital managers and commissioners responsible for allocating funds and delivering treatment, nor the tax-paying general public who fund healthcare in England and Wales are informed of the true value of these new cancer treatments.…”