PNS96 NICE SOCIAL MEDIA - IMPACT OF AD-HOC PUBLIC COMMENTS ON HST RECOMMENDATIONS

Abstract

With the incredible surge in social media usage in the 21st century, its involvement and impact on patient advocacy in health technology assessment (HTA) decision-making was inevitable. The advent of personalized medicines and eHealth will expedite this technological growth even further. The United Kingdom HTA body, National Institute of Health and Care Excellence (NICE) has provided the opportunity for the lay public to provided comments via their website during the evaluation/appraisal consultation period after the first committee appraisal meeting. This research evaluates the impact of these public comments on NICE high specialized technology (HST) recommendations. Comments on the evaluation/appraisal consultation document received from the public through the NICE Website for all published HST guidance were identified and extracted (to 31/12/2018). For the 8 HST appraisals which have been published between 2015 to 2018, 5 out of the 8 appraisals had public comments (average number: 26.8; range: 2 to 88). For those 5 HST appraisals, the longest delay to recommendation (from EC-approval to NICE final appraisal document publication) was eculizumab (38 months) and it received only 2 public comments via the website (note, this was the first HST published). In comparison the shortest delay to recommendation was burosumab (7 months) and it received 88 public comments via the website (note, this is the most recent HST appraisal published). Currently, there are only limited evidence to demonstrate the impact of ad-hoc public comments on the NICE HST appraisal process, which itself already includes formalized patient perspectives in addition to the standard technology appraisal criteria of clinical-effectiveness and cost-effectiveness. However, the potential is clear on the power of social media in enabling the voice of the patient, families, and caregivers, and the opportunity it presents to impact on NICE decision-making.