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Critical reflections on realist review: Insights from customizing the methodology to the needs of participatory research assessment
Realist review has increased in popularity as a methodology for complex intervention assessment. Our experience suggests that the process of designing a realist review requires its customization to areas under investigation. To elaborate on this idea, we first describe the logic underpinning realist review and then present critical reflections on our application experience, organized in seven areas. These are the following: (1) the challenge of identifying middle range theory; (2) addressing heterogeneity and lack of conceptual clarity; (3) the challenge of appraising the quality of complex evidence; (4) the relevance of capturing unintended outcomes; (5) understanding the process of context, mechanism, and outcome (CMO) configuring (6) incorporating middle-range theory in the CMO configuration process; and (7) using middle range theory to advance the conceptualization of outcomes - both visible and seemingly 'hidden'. One conclusion from our experience is that the degree of heterogeneity of the evidence base will determine whether theory can drive the development of review protocols from the outset, or will follow only after an intense period of data immersion. We hope that presenting a critical reflection on customizing realist review will convey how the methodology can be tailored to the often complex and idiosyncratic features of health research, leading to innovative evidence syntheses. Copyright
Achieving and sustaining profound institutional change in healthcare: Case study using neo-institutional theory
Change efforts in healthcare sometimes have an ambitious, whole-system remit and seek to achieve fundamental changes in norms and organisational culture rather than (or as well as) restructuring the service. Long-term evaluation of such initiatives is rarely undertaken. We report a secondary analysis of data from an evaluation of a profound institutional change effort in London, England, using a mixed-method longitudinal case study design. The service had received £15 million modernisation funding in 2004, covering multiple organisations and sectors and overseen by a bespoke management and governance infrastructure that was dismantled in 2008. In 2010-11, we gathered data (activity statistics, documents, interviews, questionnaires, site visits) and compared these with data from 2003 to 2008. Data analysis was informed by neo-institutional theory, which considers organisational change as resulting from the material-resource environment and three 'institutional pillars' (regulative, normative and cultural-cognitive), enacted and reproduced via the identities, values and activities of human actors. Explaining the long-term fortunes of the different components of the original programme and their continuing adaptation to a changing context required attention to all three of Scott's pillars and to the interplay between macro institutional structures and embedded human agency. The paper illustrates how neo-institutional theory (which is typically used by academics to theorise macro-level changes in institutional structures over time) can also be applied at a more meso level to inform an empirical analysis of how healthcare organisations achieve change and what helps or hinders efforts to sustain those changes.
Technology as system innovation: A key informant interview study of the application of the diffusion of innovation model to telecare
Purpose: To identify and explore factors that influence adoption, implementation and continued use of telecare technologies. Method: As part of the Assistive Technologies for Healthy Living in Elders: Needs Assessment by Ethnography (ATHENE) project, 16 semi-structured interviews were conducted with key participants from organisations involved in developing and providing telecare technologies and services. Data were analysed thematically, using a conceptual model of diffusion of innovations. Results: Participants identified numerous interacting factors that facilitated or hindered adoption and use. As predicted by the model, these related variously to the technology, individual adopters, the process of social influence, the innovativeness and readiness of organisations, implementation and routinisation processes following initial adoption, and the nature and strength of linkages between these elements. Key issues included (i) the complexity and uniqueness of the "user system", (ii) the ongoing work needed to support telecare use beyond initial adoption, and (iii) the relatively weak links that typically exist between users of telecare technologies and the organisations who design and distribute them. Conclusions: Telecare is not merely a technology but a complex innovation requiring input from, and coordination between, people and organisations. To promote adoption and use, these contextual factors must be specified, understood and addressed.Implications for RehabilitationTelecare should not be thought of as a "plug and play" technology but as a complex innovation requiring input from, and coordination between, people and organisations.To promote adoption and use of telecare, a number of contextual factors must be specified, understood and addressed.End users and other stakeholders should be linked at the earliest stages of design and development. Such co-production should aim to identify how technologies might better fit with users' material surroundings, social networks and desired lifestyles, rather than being technology-driven and focused on proof of concept or usability. © 2014 Informa UK Ltd.
Face coverings for the public: Laying straw men to rest
Background. This article responds to one by Graham Martin and colleagues, who offered a critique of my previous publications on face coverings for the lay public in the Covid-19 pandemic. Their paper reflects criticisms that have been made of face coverings policies more generally. Method. Narrative rebuttal. Results. I address charges that my coauthors and I had misapplied the precautionary principle; drawn conclusions that were not supported by empirical research; and failed to take account of potential harms. But before that, I remind my critics that the evidence on face coverings goes beyond the contested trials and observational studies they place centre stage. I set out some key findings from basic science, epidemiology, mathematical modelling, case studies, and natural experiments, and use this rich and diverse body of evidence as the backdrop for my rebuttal of their narrowly framed objections. I challenge my critics' apparent assumption that a particular kind of systematic review should be valorised over narrative and real-world evidence, since stories are crucial to both our scientific understanding and our moral imagination. Conclusion. I conclude by thanking my academic adversaries for the intellectual sparring match, but exhort them to remember our professional accountability to a society in crisis. It is time to lay straw men to rest and embrace the full range of evidence in the context of the perilous threat the world is now facing.
Beyond Adoption: A New Framework for Theorizing and Evaluating Nonadoption, Abandonment, and Challenges to the Scale-Up, Spread, and Sustainability of Health and Care Technologies (Preprint)
BACKGROUND Many promising technological innovations in health and social care are characterized by nonadoption or abandonment by individuals or by failed attempts to scale up locally, spread distantly, or sustain the innovation long term at the organization or system level. OBJECTIVE Our objective was to produce an evidence-based, theory-informed, and pragmatic framework to help predict and evaluate the success of a technology-supported health or social care program. METHODS The study had 2 parallel components: (1) secondary research (hermeneutic systematic review) to identify key domains, and (2) empirical case studies of technology implementation to explore, test, and refine these domains. We studied 6 technology-supported programs—video outpatient consultations, global positioning system tracking for cognitive impairment, pendant alarm services, remote biomarker monitoring for heart failure, care organizing software, and integrated case management via data sharing—using longitudinal ethnography and action research for up to 3 years across more than 20 organizations. Data were collected at micro level (individual technology users), meso level (organizational processes and systems), and macro level (national policy and wider context). Analysis and synthesis was aided by sociotechnically informed theories of individual, organizational, and system change. The draft framework was shared with colleagues who were introducing or evaluating other technology-supported health or care programs and refined in response to feedback. RESULTS The literature review identified 28 previous technology implementation frameworks, of which 14 had taken a dynamic systems approach (including 2 integrative reviews of previous work). Our empirical dataset consisted of over 400 hours of ethnographic observation, 165 semistructured interviews, and 200 documents. The final nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework included questions in 7 domains: the condition or illness, the technology, the value proposition, the adopter system (comprising professional staff, patient, and lay caregivers), the organization(s), the wider (institutional and societal) context, and the interaction and mutual adaptation between all these domains over time. Our empirical case studies raised a variety of challenges across all 7 domains, each classified as simple (straightforward, predictable, few components), complicated (multiple interacting components or issues), or complex (dynamic, unpredictable, not easily disaggregated into constituent components). Programs characterized by complicatedness proved difficult but not impossible to implement. Those characterized by complexity in multiple NASSS domains rarely, if ever, became mainstreamed. The framework showed promise when applied (both prospectively and retrospectively) to other programs. CONCLUSIONS Subject to further empirical testing, NASSS could be applied across a range of technological innovations in health and social care. It has several potential uses: (1) to inform the design of a new technology; (2) to identify technological solutions that (perhaps despite policy or industry enthusiasm) have a limited chance of achieving large-scale, sustained adoption; (3) to plan the implementation, scale-up, or rollout of a technology program; and (4) to explain and learn from program failures.
Whose turn is it anyway? Latency and the organization of turn-taking in video-mediated interaction
Latency in video-mediated interaction can frustrate smooth turn-taking: it may cause participants to perceive silence at points where talk should occur, it may cause them to talk in overlap, and it impedes their ability to return to one-speaker-at-a-time. Whilst potentially frustrating for participants, this makes video-mediated interaction a perspicuous setting for the study of social interaction: it is an environment that nurtures the occurrence of turn-taking problems. For this paper, we conducted secondary analysis of 25 video consultations recorded for heart failure, (antenatal) diabetes, and cancer services in the UK. By comparing video recordings of the patient's and clinician's side of the call, we provide a detailed analysis of how latency interferes with the turn-taking system, how participants understand problems, and how they address them. We conclude that in our data latency unnoticed until it becomes problematic: participants act as if they share the same reality.
Protocol for 'virtual presence': A qualitative study of the cultural dialectic between loneliness and technology
Introduction Most research on loneliness comes from the health sciences, statistically seeking to measure the health-related effects of feeling alone or isolated. There is a need to expand on this understanding and explore loneliness as a more complex social phenomenon. In this article, we present a qualitative design for studying the intersection between loneliness, technology and culture. Conceptualising this as the cultural dialectic between loneliness and technology, we aim to unpack the reciprocal ways by which understandings of loneliness shape technology, while technologies also affect society's understandings of loneliness. In elucidating this dialectic, we aim to develop new knowledge and a novel theoretical framework for understanding loneliness and its technological solutions, which, in turn, can enable better solutions to contemporary problems of loneliness. Methods and analysis We will adopt a qualitative approach that combines interviews, participant observation and textual analysis to explore loneliness and its technological solutions from the perspectives of policy-makers, producers, professionals and users in Norway and the UK. The data will be analysed through an analytical framework combining insights from discourse theory and philosophical debates on presence, which will allow us to capture and rethink fundamental assumptions about loneliness and technology. Outcomes will be revised understandings of loneliness, relevant to researchers, entrepreneurs, policy-makers, clinicians, educators and the broader public. Ethics and dissemination The project has been evaluated and approved by the data protection officer at Oslo Metropolitan University and by the Norwegian Social Science Data Services. Additional ethical approval for data collection in the UK has been provided by the University of Oxford Interdivisional Research Ethics Committee. Informed consent will be obtained from all participants. Findings will be disseminated through peer-reviewed publications, international conference presentations and lay media.
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.