Background Approximately 10% of patients with Covid-19 experience symptoms beyond 3–4 weeks. Patients call this “long Covid”. We sought to document such patients’ lived experience, including accessing and receiving healthcare and ideas for improving services. Methods We held 55 individual interviews and 8 focus groups (n = 59) with people recruited from UK-based long Covid patient support groups, social media and snowballing. We restricted some focus groups to health professionals since they had already self-organised into online communities. Participants were invited to tell their stories and comment on others’ stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, clinical relationships, access, and service redesign. Results Of 114 participants aged 27–73 years, 80 were female. Eighty-four were White British, 13 Asian, 8 White Other, 5 Black, and 4 mixed ethnicity. Thirty-two were doctors and 19 other health professionals. Thirty-one had attended hospital, of whom 8 had been admitted. Analysis revealed a confusing illness with many, varied and often relapsing-remitting symptoms and uncertain prognosis; a heavy sense of loss and stigma; difficulty accessing and navigating services; difficulty being taken seriously and achieving a diagnosis; disjointed and siloed care (including inability to access specialist services); variation in standards (e.g. inconsistent criteria for seeing, investigating and referring patients); variable quality of the therapeutic relationship (some participants felt well supported while others felt “fobbed off”); and possible critical events (e.g. deterioration after being unable to access services). Emotionally significant aspects of participants’ experiences informed ideas for improving services. Conclusion Suggested quality principles for a long Covid service include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services. Trial registration NCT04435041.

This review of the international literature on evaluation systems, evaluation practices and metrics (mis-)uses was written as part of a larger review commissioned by the Higher Education Funding Council for England (HEFCE) to inform their independent assessment of the role of metrics in research evaluation (2014-2015). The literature on evaluation systems, practices and effects of indicator uses is extremely heterogeneous: it comprises hundreds of sources published in different media, spread over disciplines, and with considerable variation in the nature of the evidence. A condensation of the state-of-the-art in relevant research is therefore highly timely. Our review presents the main strands in the literature, with a focus on empirical materials about possible effects of evaluation exercises, 'gaming' of indicators, and strategic responses by scientific communities and others to requirements in research assessments. In order to increase visibility and availability, an adapted and updated review is presented here as a stand-aloneafter authorisation by HEFCE.

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Establishing and running remote consultation services is challenging politically (interest groups may gain or lose), organizationally (remote consulting requires implementation work and new roles and workflows), economically (costs and benefits are unevenly distributed across the system), technically (excellent care needs dependable links and high-quality audio and images), relationally (interpersonal interactions are altered), and clinically (patients are unique, some examinations require contact, and clinicians have deeply-held habits, dispositions and norms). Many of these challenges have an under-examined ethical dimension. In this paper, we present a novel framework, Planning and Evaluating Remote Consultation Services (PERCS), built from a literature review and ongoing research. PERCS has 7 domains—the reason for consulting, the patient, the clinical relationship, the home and family, technologies, staff, the healthcare organization, and the wider system—and considers how these domains interact and evolve over time as a complex system. It focuses attention on the organization's digital maturity and digital inclusion efforts. We have found that both during and beyond the pandemic, policymakers envisaged an efficient, safe and accessible remote consultation service delivered through state-of-the art digital technologies and implemented via rational allocation criteria and quality standards. In contrast, our empirical data reveal that strategic decisions about establishing remote consultation services, allocation decisions for appointment type (phone, video, e-, face-to-face), and clinical decisions when consulting remotely are fraught with contradictions and tensions—for example, between demand management and patient choice—leading to both large- and small-scale ethical dilemmas for managers, support staff, and clinicians. These dilemmas cannot be resolved by standard operating procedures or algorithms. Rather, they must be managed by attending to here-and-now practicalities and emergent narratives, drawing on guiding principles applied with contextual judgement. We complement the PERCS framework with a set of principles for informing its application in practice, including education of professionals and patients.

Persistent symptoms lasting longer than 3 weeks are thought to affect 10-2 0% of patients following SARS-CoV-2 infection. No formal guidelines exist in the UK for treating patients with long COVID and services are sporadic and variable, although additional funding is promised for their development.In this study, narrative interviews and focus groups are used to explore the lived experience of 43 healthcare professionals with long COVID. These individuals see the healthcare system from both professional and patient perspectives, thus represent an important wealth of expertise to inform service design. We present a set of co-designed quality standards, highlighting equity and ease of access, minimal patient care burden, clinical responsibility, a multidisciplinary and evidence-based approach, and patient involvement; and we apply these to propose a potential care pathway model that could be adapted and translated to improve care of patients long COVID.

The range and types of performance metrics has recently proliferated in academic settings, with bibliometric indicators being particularly visible examples. One field that has traditionally been hospitable towards such indicators is biomedicine. Here the relative merits of bibliometrics are widely discussed, with debates often portraying them as heroes or villains. Despite a plethora of controversies, one of the most widely used indicators in this field is said to be the Journal Impact Factor (JIF). In this article we argue that much of the current debates around researchers’ uses of the JIF in biomedicine can be classed as ‘folk theories’: explanatory accounts told among a community that seldom (if ever) get systematically checked. Such accounts rarely disclose how knowledge production itself becomes more-or-less consolidated around the JIF. Using ethnographic materials from different research sites in Dutch University Medical Centers, this article sheds new empirical and theoretical light on how performance metrics variously shape biomedical research on the ‘shop floor.’ Our detailed analysis underscores a need for further research into the constitutive effects of evaluative metrics.

A researcher's number of publications has been a fundamental merit in the competition for academic positions since the late 18th century. Today, the simple counting of publications has been supplemented with a whole range of bibliometric indicators, which supposedly not only measures the volume of research but also its impact. In this study, we investigate how bibliometrics are used for evaluating the impact and quality of publications in two specific settings: biomedicine and economics. Our study exposes the various metrics used in external evaluations of candidates for academic positions at Swedish universities. Moreover, we show how different bibliometric indicators, both explicitly and implicitly, are employed to assess and rank candidates. Our findings contribute to a further understanding of bibliometric indicators as 'judgment devices' that are employed in evaluating individuals and their published works within specific fields. We also show how 'expertise' in using bibliometrics for evaluative purposes is negotiated at the interface between domain knowledge and skills in using indicators. In line with these results, we propose that the use of metrics we report is best described as a form of 'citizen bibliometrics'-an underspecified term which we build upon in the article.

Background Approximately 10% of patients with Covid-19 experience symptoms beyond 3-4 weeks. Patients call this long Covid. We sought to document the lived experience of such patients, their accounts of accessing and receiving healthcare, and their ideas for improving services. Method We held 55 individual interviews and 8 focus groups (n = 59) with people recruited from UK-based long Covid patient support groups, social media and snowballing. We restricted some focus groups to health professionals since they had already self-organised into online communities. Participants were invited to tell their personal stories and comment on other stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, the clinical relationship, access to care, and service redesign. Results The sample was 70% female, aged 27-73 years, and comprised White British (74%), Asian (11%), White Other (7%), Black (4%), and Mixed (4%). 27 were doctors and 23 other health professionals. Approximately 10% had been hospitalised. Analysis revealed a confusing illness with many, varied and often relapsing-remitting symptoms and uncertain prognosis; a heavy sense of loss and stigma; difficulty accessing and navigating services; difficulty being taken seriously and achieving a diagnosis; disjointed and siloed care (including inability to access specialist services); variation in standards (e.g. inconsistent criteria for seeing, investigating and referring patients); variable quality of the therapeutic relationship (some participants felt well supported while others described feeling fobbed off); and possible critical events (e.g. deterioration after being unable to access services). Emotional touch points in participant experiences informed ideas for improving services. Conclusion Quality principles for a long Covid service should include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services.