Lyme disease politics and evidence‑based policy making in the UK

Abstract

There are few ‘accepted’ approaches to dealing with tick- borne infections (including Lyme disease) that have not been challenged. This case study looks at my role in UK Lyme patient’s activism and policy change (for example, related to the NICE clinical guidelines process) focussing on one specific policy issue. It shows how critical analysis of scientific, clinical and other real- world evidence drew on and reflected the ethos of the Radstats network. It is a story showing how I worked with others with statistical skills - using science and evidence to challenge policy successfully. It explains how communities can take action, while using or creating scientific knowledge - to improve policy and people’s health. It shows how networks of communities can engage through social change (based on an understanding of policy and science) to make it more socially relevant and responsive, as well as more scientifically robust.