What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography.

BACKGROUND: Long covid (post covid-19 condition) is a complex condition with diverse manifestations, uncertain prognosis and wide variation in current approaches to management. There have been calls for formal quality standards to reduce a so-called "postcode lottery" of care. The original aim of this study-to examine the nature of quality in long covid care and reduce unwarranted variation in services-evolved to focus on examining the reasons why standardizing care was so challenging in this condition. METHODS: In 2021-2023, we ran a quality improvement collaborative across 10 UK sites. The dataset reported here was mostly but not entirely qualitative. It included data on the origins and current context of each clinic, interviews with staff and patients, and ethnographic observations at 13 clinics (50 consultations) and 45 multidisciplinary team (MDT) meetings (244 patient cases). Data collection and analysis were informed by relevant lenses from clinical care (e.g. evidence-based guidelines), improvement science (e.g. quality improvement cycles) and philosophy of knowledge. RESULTS: Participating clinics made progress towards standardizing assessment and management in some topics; some variation remained but this could usually be explained. Clinics had different histories and path dependencies, occupied a different place in their healthcare ecosystem and served a varied caseload including a high proportion of patients with comorbidities. A key mechanism for achieving high-quality long covid care was when local MDTs deliberated on unusual, complex or challenging cases for which evidence-based guidelines provided no easy answers. In such cases, collective learning occurred through idiographic (case-based) reasoning, in which practitioners build lessons from the particular to the general. This contrasts with the nomothetic reasoning implicit in evidence-based guidelines, in which reasoning is assumed to go from the general (e.g. findings of clinical trials) to the particular (management of individual patients). CONCLUSION: Not all variation in long covid services is unwarranted. Largely because long covid's manifestations are so varied and comorbidities common, generic "evidence-based" standards require much individual adaptation. In this complex condition, quality improvement resources may be productively spent supporting MDTs to optimise their case-based learning through interdisciplinary discussion. Quality assessment of a long covid service should include review of a sample of individual cases to assess how guidelines have been interpreted and personalized to meet patients' unique needs. STUDY REGISTRATION: NCT05057260, ISRCTN15022307.

Experiences from the frontline: An exploration of personal advisers' practice with claimants who have health-related needs within UK welfare-to-work provision.

Recent UK welfare reforms have been less successful than expected by the Government in supporting unemployed people with long-term illness into work. Frontline workers remain a core element of the new welfare-to-work machinery, but operate within a changed organisational and policy landscape. These changes raise important questions regarding whether and how claimants' health-related barriers to work are considered. This paper examines the UK welfare-to-work frontline worker's role with claimants who have long-term illness. Fieldwork observations in three not-for-profit employment support services and semi-structured interviews with 29 participants (claimants, frontline workers, healthcare professionals and managers) were conducted between 2011 and 2012. Participant observation of the wider welfare-to-work arena was initiated in 2009 and continued until 2013. A qualitative methodology drawing on ethnographic principles was adopted. Thematic analysis of the data was carried out. The findings show that the frontline worker plays a key role in assessing and addressing claimants' health-related barriers to work. Two important health-related role dimensions were identified: a health promoter role which involved giving health promotional advice to claimants about their general health; and a health monitor role which involved observing and questioning claimants about their general health. Frontline workers' practice approaches were shaped by organisational and individual factors. Integration between the National Health Service and employment support services was limited, and the findings suggested improvements were required to ensure an adequate response to claimants' health-related needs to support their journey into work.