Definitely maybe: new governance of uncertainty and risk in patient group involvement with UK guidance on testing for Lyme disease

Faulkner, Alex, Bloor, Kate and Hale, Vahsti (2019) Definitely maybe: new governance of uncertainty and risk in patient group involvement with UK guidance on testing for Lyme disease. Science, Technology and Society. ISSN 0971-7218 (Accepted)

[img] PDF - Accepted Version
Restricted to SRO admin only

Download (337kB)
Official URL: https://dx.doi.org/

Abstract

States that claim responsibility for citizens’ healthcare try to deal with knowledge uncertainties while preserving a duty of care. Production of clinical guidelines in disputed medical conditions or where uncertainty is high, is difficult. Patient groups may advocate non-credentialed evidence, contribute to debates, and form alliances with established policy actors. In this context, Lyme disease, especially highly contested ‘chronic’ Lyme disease is a good case with which to examine how official governance institutions are managing diagnostic uncertainty and evidence for tests. The healthcare state has been provoked to develop extensive policy for Lyme disease. In the UK, national Health Technology Assessment agency, NICE, began a consultation process in 2016. NICE and other policy actors are moving toward more participatory modes of decision-making. The paper analyses NICE’s recently published guidelines and consultation documents; patient groups’ contributions; observations of consultations and of evidence review processes; and recent Department of Health systematic reviews including patient group participation. We draw on concepts of participatory governance, patient group activism and guideline involvement. We find an increased level of participation by patient groups in recent policy and evidence review processes, and hence legitimation of them as ‘stakeholders’, alongside a strengthened state position on pre-existing diagnostic and testing standards.

Item Type: Article
Keywords: Lyme disease diagnosis & testing; participatory governance; stakeholder engagement; patient organisations
Schools and Departments: School of Global Studies > International Relations
Research Centres and Groups: Centre for Global Health Policy
Subjects: H Social Sciences > HV Social pathology. Social and public welfare. Criminology
H Social Sciences > HV Social pathology. Social and public welfare. Criminology > HV0547 Self-help groups
J Political Science > JC Political theory. The state. Theories of the state
J Political Science > JC Political theory. The state. Theories of the state > JC501 Purpose, functions, and relations of the state
R Medicine > RA Public aspects of medicine
R Medicine > RA Public aspects of medicine > RA0001 Medicine and the state. Including medical statistics, medical economics, provisions for medical care, medical sociology
R Medicine > RA Public aspects of medicine > RA0001 Medicine and the state. Including medical statistics, medical economics, provisions for medical care, medical sociology > RA0418 Medicine and society. Social medicine. Medical sociology
Depositing User: Alex Faulkner
Date Deposited: 14 Aug 2019 13:09
Last Modified: 14 Aug 2019 13:15
URI: http://sro.sussex.ac.uk/id/eprint/85450

View download statistics for this item

📧 Request an update