University of Sussex
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Knowledge and uncertainty in Lyme disease detection: an evidence-based activism research study in the UK

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journal contribution
posted on 2023-06-09, 20:23 authored by Kate Bloor, Vahsti Hale, Alex Faulkner
There are increasing levels of concern about policy and practice related to Lyme disease testing and diagnosis in the UK. A complex debate has emerged, with patient groups challenging clinical and testing practices. This paper focuses on four dimensions of diagnostic testing: accuracy, types of test, clinical application and test interpretation, to illustrate the divergence amongst and between official and patient group views. We explore these issues via analysis of information from sources including patient organisations’ documents and statutory policy and professional publications, supplemented by data from an online questionnaire survey. Our analysis shows lack of consistency in policy, consumerist strategies among patients, and official policy that inhibits illness identity and maintains hard boundaries between patients’ experience and public health practice. We suggest that medical policy and practice have become entrenched in defensive testing and clinical protocol. We note recently emerging trends in consultation and patient group involvement, illustrating more participative public health governance. Further, as a joint patient organisation-academic project, we contribute to understanding of patient organisation activism in public health by demonstrating our own collaborative, reflective ‘evidence-based’ activist research. Notably, in doing so we deploy a variety of forms of knowledge and ‘evidence’ beyond the often acknowledged, but limited ‘experiential’ and ‘embodied’ forms. On this basis we recommend that shared-decision-making and ‘facilitational’ advocacy would improve patients’ empowerment and experience of testing and diagnosis. We argue that such reforms will enhance the perceived legitimacy of ‘chronic’ Lyme disease claims even under the conditions of scientific and medical uncertainty that prevail.


Publication status

  • Published

File Version

  • Accepted version


Critical Public Health




Taylor & Francis

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Department affiliated with

  • International Relations Publications

Research groups affiliated with

  • Centre for Global Health Policy Publications

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  • Yes

Peer reviewed?

  • Yes

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