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We lead multidisciplinary applied research and training to rethink the way health care is delivered in general practice and across the community.
Moral entrepreneurship, the power-knowledge nexus, and the Cochrane “crisis”
Background: In 2018, a so-called crisis developed in the international network of systematic reviewers known as Cochrane. It was widely depicted in terms of two competing narratives—“bad behaviour” by one member of Cochrane's Governing Board and scientific and moral decline within Cochrane. Objective: Our goal was to distil insights on the structural issues underpinning the crisis, without taking a definitive position on the accuracy of either narrative. Approach and dataset: In this paper, we draw on (among other theories) Becker's notion of moral entrepreneurship and Foucault's conceptualisation of power to analyse the claims and counterclaims made by different parties. Our dataset consisted of publicly available materials (blogs, journal articles, newspaper articles) to end 2018, notably those relating to the expulsion of one Governing Board member. Main findings: Both narratives include strong moral claims about the science of systematic review and the governance of scientific organizations. The expelled individual and his supporters defined good systematic reviews in terms of a particular kind of methodological rigour and elimination of bias, and good governance largely in terms of measures to achieve independence from industry influence. Most of Cochrane's Governing Board and their sympathizers evaluated systematic reviews according to a broader range of criteria, incorporating factors such as attention to relationships among reviewers and reflexivity and dialogue around scientific and other judgements. They viewed governance partly in terms of accountability to an external advisory group. Power-knowledge alignments in Cochrane have emerged from, and contributed to, a particular system of meaning which is now undergoing evolution and challenge. Conclusion: Polarizing Cochrane's “crisis” into two narratives, only one of which is true, is less fruitful than viewing it in terms of a duality consisting of tensions between the two positions, each of which has some validity. Having framed the conflict as primarily philosophical and political rather than methodological and procedural, we suggest how Cochrane and its supporters and critics might harness their tensions productively.
Efficacy of population-wide diabetes and obesity prevention programs: An overview of systematic reviews on proximal, intermediate, and distal outcomes and a meta-analysis of impact on BMI
We conducted an overview of systematic reviews and a meta-analysis of the impact on body mass index (BMI) of primary studies of population-wide obesity and diabetes prevention programs, in order to evaluate their efficacy. We searched eight databases for reviews of population-level programs reporting effect on diet, physical activity, BMI, or prevalence of obesity/overweight or type 2 diabetes mellitus (T2DM). Meta-analysis of primary studies within reviews reporting effect on BMI. Interventions were categorized using ANGELO framework and quality assessment using AMSTAR. Fifty-three systematic reviews were included. Primary studies were largely natural experiments or cross-sectional studies of national data. Increased price of sugar-sweetened beverages (SSBs) and fast food, decreased price of fruit and vegetables, food labelling, and grocery store interventions were associated with positive effects on diet. Park and playground renovations and point-of-choice prompts to increase stair use were associated with positive effects on physical activity. Increased price of SSBs, menu labelling, grocery store interventions, and multicomponent interventions were associated with small reductions in BMI. There was insufficient evidence of impact of any interventions on the prevalence of overweight, obesity, or T2DM. We have identified a promising suite of population-wide actions to improve diet, increase physical activity, and reduce BMI. Impact on subsequent incidence of T2DM remains speculative.
Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality criteria for services
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 others’ 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. 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 felt “fobbed off”); and possible critical events (e.g. deterioration after being unable to access services). Emotional touch points in participants’ 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. Study registration NCT04435041
A practical guide for using a survey about attitudes and behaviors to inform health care decisions
Objectives: Surveys can provide important information about what people think or do. There is little guidance about how to use surveys in decision-making. This article provides guidance for how to appraise and use a survey to answer health care questions. Study Design and Setting: A guidance article about the use a survey of a selected sample of people, who completed a self-report tool about their knowledge, beliefs and opinions, behaviors and experiences, or personal attributes. We use survey examples, one scenario, and a specific survey for illustration. Results: Decision makers should consider the credibility and applicability of the results of a survey. Key threats to credibility depend on the representativeness of the population and likelihood that it provides an accurate picture of the population's knowledge, attitudes, or self-reported practices. If survey investigators do not use rigorous strategies to develop or pretest questions, there is a greater risk that results will be misleading. Decision makers may want to consider the precision of estimates and whether it would change their decisions. Finally, they need to decide how similar the surveyed population is to their specific population before applying results. Conclusions: Decision makers can follow this guidance to critically appraise, interpret, and apply the results of surveys to health care questions.
Masks and face coverings for the lay public: A narrative update
Whether and when to mandate the wearing of masks or face coverings by the public to prevent the spread of Covid-19 remains controversial. We summarise a large research literature across a range of academic disciplines. There is growing evidence that SARS-CoV-2 is airborne, hence may travel long distances and be inhaled. Infection control policies must therefore go beyond contact and droplet measures (such as hand-washing and cleaning surfaces) and attend more carefully to masking and ventilation. Masks work mainly by source control (protecting others) but give some protection to wearers. Even small reductions in individual transmission with ‘imperfect’ masks and face coverings could lead to large effects on population spread. Randomized controlled trials of the preventive effect of population masking in Covid-19 remain sparse and have not addressed source control. Performance varies widely across different kinds of mask; comfort and fit need to be optimized. Masks may cause discomfort and communication difficulties, which affect some groups (e.g. d/Deaf) disproportionately. The harms of mask-wearing were over-estimated in the early months of the pandemic; there is no evidence that risk compensation occurs in people who wear them or that masks account for significant fomite transmission. Masks do not cause clinically significant physiological decompensation in healthy people. Documented medical exemptions to mask-wearing are few. The psychological impacts of masks are culturally shaped; they may include threats to autonomy, social relatedness and competence. Whilst harms of masks are generally outweighed by benefits when COVID-19 is spreading in a population, mandated masking involves a trade-off with personal freedom, so such policies should be pursued only if the threat is severe and benefits cannot be achieved through less intrusive means.
Putting the social back into sociotechnical: Case studies of co-design in digital health
Objective: We sought to examine co-design in 3 contrasting case studies of technology-supported change in health care and explain its role in influencing project success. Materials and Methods: Longitudinal case studies of a seizure detection and reporting technology for epilepsy (Southern England, 2018-2019), a telehealth service for heart failure (7 UK sites, 2016-2018), and a remote video consultation service (Scotland-wide, 2019-2020). We carried out interviews with 158 participants and collected more than 200 pages of field notes from observations. Within-and cross-case analysis was informed by sociotechnical theory. Results: In the epilepsy case, co-design prioritized patient-facing features and focused closely around a specific clinic, which led to challenges with sustainability and mainstreaming. In the heart failure case, patient-focused co-design produced an accessible and usable patient portal but resulted in variation in uptake between clinical sites. Successful scale-up of video consultations was explained by a co-design process involving not only the technical interface, but also careful reshaping of work practices. Discussion: A shift is needed from co-designing with technology users to co-designing with patients as service users, and with healthcare staff as professionals. Good co-design needs to involve users, including those who engage with the technology-supported service bothdirectly and indirectly. It requires sensitivity to emergence and unpredictability in complex systems. Healthcare staff need to be supported to accommodate iterative change in the service. Adequate resourcing and infrastructures for systems-focused co-design are essential. Conclusions: If co-design focuses narrowly on the technology, opportunities will be missed to coevolve technologies alongside clinical practices and organizational routines.
Explaining the mixed findings of a randomised trial of telehealth with centralised remote support for heart failure: qualitative evaluation
Background: Centralised specialist remote support, in which a clinician responds promptly to biomarker changes, could potentially improve outcomes in heart failure. The SUPPORT-HF2 trial compared telehealth technology alone with the same technology combined with centralised remote support. The intervention was implemented differently in different sites; no significant impact was found overall. We sought to explain these findings in a qualitative evaluation. Methods: 51 people (25 patients, 3 carers, 18 clinicians and 4 additional research staff) were interviewed and observed in 7 SUPPORT-HF sites across UK between 2016 and 2018. We also collected 110 pages of documents. Analysis was informed by sociotechnical theory. Results: Patients’ experiences of the technology were largely positive; staff engaged with the intervention to a variable degree. Existing services, staffing levels, technical capacity and previous experience with telehealth all influenced how the complex intervention of ‘telehealth technology plus centralised specialist remote support’ was interpreted and the extent to which it was adopted and used to its full potential. In some settings, the intervention was quickly mobilised to fill significant gaps in service provision. In others, it was seen as usefully extending the existing care model for selected patients. However, in some settings, the new care model was actively resisted and the technology little used. In one setting, centralised provision of specialist advice aligned awkwardly with an existing community-based heart failure support service. Conclusions: The introduction of a telehealth programme rests not only on the technological intervention but also on the individuals involved and numerous subtle aspects of local service design. An iterative approach that attends to patients’ illness experiences, clinicians’ professional values, work practices and care pathways could lead to more effective telehealth support for patients with heart failure.
Planning and Evaluating Remote Consultation Services: A New Conceptual Framework Incorporating Complexity and Practical Ethics
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.
Analysing the role of complexity in explaining the fortunes of technology programmes: Empirical application of the NASSS framework
Background: Failures and partial successes are common in technology-supported innovation programmes in health and social care. Complexity theory can help explain why. Phenomena may be simple (straightforward, predictable, few components), complicated (multiple interacting components or issues) or complex (dynamic, unpredictable, not easily disaggregated into constituent components). The recently published NASSS framework applies this taxonomy to explain Non-adoption or Abandonment of technology by individuals and difficulties achieving Scale-up, Spread and Sustainability. This paper reports the first empirical application of the NASSS framework. Methods: Six technology-supported programmes were studied using ethnography and action research for up to 3 years across 20 health and care organisations and 10 national-level bodies. They comprised video outpatient consultations, GPS tracking technology for cognitive impairment, pendant alarm services, remote biomarker monitoring for heart failure, care organising software and integrated case management via data warehousing. Data were collected at three levels: micro (individual technology users), meso (organisational processes and systems) and macro (national policy and wider context). Data analysis and synthesis were guided by socio-technical theories and organised around the seven NASSS domains: (1) the condition or illness, (2) the technology, (3) the value proposition, (4) the adopter system (professional staff, patients and lay carers), (5) the organisation(s), (6) the wider (institutional and societal) system and (7) interaction and mutual adaptation among all these domains over time. Results: The study generated more than 400 h of ethnographic observation, 165 semi-structured interviews and 200 documents. The six case studies raised multiple challenges across all seven domains. Complexity was a common feature of all programmes. In particular, individuals' health and care needs were often complex and hence unpredictable and 'off algorithm'. Programmes in which multiple domains were complicated proved difficult, slow and expensive to implement. Those in which multiple domains were complex did not become mainstreamed (or, if mainstreamed, did not deliver key intended outputs). Conclusion: The NASSS framework helped explain the successes, failures and changing fortunes of this diverse sample of technology-supported programmes. Since failure is often linked to complexity across multiple NASSS domains, further research should systematically address ways to reduce complexity and/or manage programme implementation to take account of it.