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 towards more participatory modes of decision-making. The article 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.

声称对公民的医疗保健负有责任的国家试图在维护护理义务的同时处理知识的不确定性。在有争议的医疗条件或不确定性很高的情况下，很难制定临床指南。患者团体可以倡导非凭证式证据，参与辩论并与既定的政策参与者结盟。在这种情况下，莱姆病，尤其是竞争激烈的“慢性”莱姆病是一个很好的案例，可以用来检查官方治理机构如何管理诊断不确定性和测试证据。医务州已被激起发展针对莱姆病的广泛政策。在英国，国家健康技术评估机构NICE于2016年开始了咨询程序。NICE和其他政策参与者正在朝着更具参与性的决策模式迈进。本文分析了NICE最近发布的指南和咨询文件；病人团体的贡献；磋商意见和证据审查过程；以及最近的卫生部系统评价，包括患者组的参与。我们借鉴参与式治理，患者团体行动和准则参与的概念。我们发现患者群体在最近的政策和证据审查流程中的参与程度有所提高，因此将他们合法化为“利益相关者”，同时强化了国家对既有诊断和测试标准的立场。咨询意见和证据审查过程；以及最近的卫生部系统评价，包括患者组的参与。我们借鉴参与式治理，患者团体行动和准则参与的概念。我们发现患者群体在最近的政策和证据审查流程中的参与程度有所提高，因此将他们合法化为“利益相关者”，同时强化了国家对既有诊断和测试标准的立场。咨询意见和证据审查过程；以及最近的卫生部系统评价，包括患者组的参与。我们借鉴参与式治理，患者团体行动和指南参与的概念。我们发现患者群体在最近的政策和证据审查流程中的参与程度有所提高，因此将他们合法化为“利益相关者”，同时强化了国家对既有诊断和测试标准的立场。