Center for Primary Care and Public Health

London, United Kingdom

Center for Primary Care and Public Health

London, United Kingdom
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Wherton J.,Center for Primary Care and Public Health | Sugarhood P.,East London NHS Foundation Trust | Procter R.,University of Warwick | Hinder S.,Center for Primary Care and Public Health | Greenhalgh T.,University of Oxford
Implementation Science | Year: 2015

Background: The low uptake of telecare and telehealth services by older people may be explained by the limited involvement of users in the design. If the ambition of 'care closer to home' is to be realised, then industry, health and social care providers must evolve ways to work with older people to co-produce useful and useable solutions. Method: We conducted 10 co-design workshops with users of telehealth and telecare, their carers, service providers and technology suppliers. Using vignettes developed from in-depth ethnographic case studies, we explored participants' perspectives on the design features of technologies and services to enable and facilitate the co-production of new care solutions. Workshop discussions were audio recorded, transcribed and analysed thematically. Results: Analysis revealed four main themes. First, there is a need to raise awareness and provide information to potential users of assisted living technologies (ALTs). Second, technologies must be highly customisable and adaptable to accommodate the multiple and changing needs of different users. Third, the service must align closely with the individual's wider social support network. Finally, the service must support a high degree of information sharing and coordination. Conclusions: The case vignettes within inclusive and democratic co-design workshops provided a powerful means for ALT users and their carers to contribute, along with other stakeholders, to technology and service design. The workshops identified a need to focus attention on supporting the social processes that facilitate the collective efforts of formal and informal care networks in ALT delivery and use. © 2015 Wherton et al.

Jagosh J.,McGill University | MacAulay A.C.,McGill University | Pluye P.,McGill University | Salsberg J.,McGill University | And 9 more authors.
Milbank Quarterly | Year: 2012

Context: Participatory research (PR) is the co-construction of research through partnerships between researchers and people affected by and/or responsible for action on the issues under study. Evaluating the benefits of PR is challenging for a number of reasons: the research topics, methods, and study designs are heterogeneous; the extent of collaborative involvement may vary over the duration of a project and from one project to the next; and partnership activities may generate a complex array of both short- and long-term outcomes. Methods: Our review team consisted of a collaboration among researchers and decision makers in public health, research funding, ethics review, and community-engaged scholarship. We identified, selected, and appraised a large-variety sample of primary studies describing PR partnerships, and in each stage, two team members independently reviewed and coded the literature. We used key realist review concepts (middle-range theory, demi-regularity, and context-mechanism-outcome configurations [CMO]) to analyze and synthesize the data, using the PR partnership as the main unit of analysis. Findings: From 7,167 abstracts and 591 full-text papers, we distilled for synthesis a final sample of twenty-three PR partnerships described in 276 publications. The link between process and outcome in these partnerships was best explained using the middle-range theory of partnership synergy, which demonstrates how PR can (1) ensure culturally and logistically appropriate research, (2) enhance recruitment capacity, (3) generate professional capacity and competence in stakeholder groups, (4) result in productive conflicts followed by useful negotiation, (5) increase the quality of outputs and outcomes over time, (6) increase the sustainability of project goals beyond funded time frames and during gaps in external funding, and (7) create system changes and new unanticipated projects and activities. Negative examples illustrated why these outcomes were not a guaranteed product of PR partnerships but were contingent on key aspects of context. Conclusions: We used a realist approach to embrace the heterogeneity and complexity of the PR literature. This theory-driven synthesis identified mechanisms by which PR may add value to the research process. Using the middle-range theory of partnership synergy, our review confirmed findings from previous PR reviews, documented and explained some negative outcomes, and generated new insights into the benefits of PR regarding conflicts and negotiation between stakeholders, program sustainability and advancement, unanticipated project activity, and the generation of systemic change. © 2012 Milbank Memorial Fund.

Swinglehurst D.,Center for Primary Care and Public Health | Roberts C.,King's College London | Greenhalgh T.,Center for Primary Care and Public Health
Communication and Medicine | Year: 2011

One of the most pervasive changes in general practice is the introduction of the electronic patient record (EPR). The EPR supports both immediate clinical and anticipatory care (e.g. management of risk factors). Incorporating the EPR into social interaction is a complex task which is achieved discursively, clinician and patient responding to interactional contingencies as the consultation unfolds. Clinicians are presented with a 'dilemma of attention' as they seek to deal with the immediacy ('here and now') of the interpersonal interaction and the institutional demands ('there and then') of the EPR. We present data analysis which illuminates the EPR as an important presence in the clinic consultation context, one which places material and textual demands. Developing previous work on the triadic (three party) consultation, our novel multimodal analysis of the EPR-in-use suggests there is value in considering the EPR as a collection of silent but consequential voices. Micro-analytic attention to the way in which these different voices are managed, combined with understandings drawn from ethnographic observation of the primary care context, reveals the EPR as exhibiting a previously under-explored kind of 'agency' within the consultation. Copyright © Equinox Publishing Ltd.

Macfarlane F.,Center for Primary Care and Public Health | Barton-Sweeney C.,Center for Primary Care and Public Health | Woodard F.,Cancer and Transformation Programmes and Organisational Development | Greenhalgh T.,Center for Primary Care and Public Health
Social Science and Medicine | Year: 2013

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. © 2013 Elsevier Ltd.

Greenhalgh T.,Center for Primary Care and Public Health | MacFarlane F.,Center for Primary Care and Public Health | Barton-Sweeney C.,Center for Primary Care and Public Health | Woodard F.,Kings Health Partners
Milbank Quarterly | Year: 2012

Context: The long-term sustainability of whole-system change programs is rarely studied, and when it is, it is inevitably undertaken in a shifting context, thereby raising epistemological and methodological questions. This article describes a transferable methodology that was developed to guide the evaluation of a three-year follow-up of a large health care change program in London, which took place during a period of economic turbulence and rapid policy change. Method: Using a mixed-method organizational case study design, we studied three services (stroke, kidney, and sexual health) across primary and secondary care. Each had received €5 million (US$7.8 million) in modernization funding in 2004. In 2010/2011, we gathered data on the services and compared them with data from 2004 to 2008. The new data set contained quantitative statistics (access, process, and outcome metrics), qualitative interviews with staff and patients, documents, and field notes. Our data analysis was informed by two complementary models of sustainability: intervention-focused (guided by the question, What, if anything, of the original program has been sustained?) and system-dynamic (guided by the question, How and why did change unfold as it did in this complex system?). Findings: Some but not all services introduced in the original transformation effort of 2004-2008 were still running; others had ceased or been altered substantially to accommodate contextual changes (e.g., in case mix, commissioning priorities, or national policies). Key cultural changes (e.g., quality improvement, patient centeredness) largely persisted, and innovative ideas and practices had spread elsewhere. To draw causal links between the original program and current activities and outcomes, it was necessary to weave a narrative thread with multiple intervening influences. In particular, against a background of continuous change in the local health system, the sustainability of the original vision and capacity for quality improvement was strongly influenced by (1) stakeholders' conflicting and changing interpretations of the targeted health need; (2) changes in how the quality cycle was implemented and monitored; and (3) conflicts in stakeholders' values and what each stood to gain or lose. Conclusions: The sustainability of whole-system change embodies a tension between the persistence of past practice and the adaptation to a changing context. Although the intervention-focused question, What has persisted from the original program? (addressed via a conventional logic model), may be appropriate, evaluators should qualify their findings by also considering the system-dynamic question, What has changed, and why? (addressed by producing a meaningful narrative). © 2012 Milbank Memorial Fund.

Greenhalgh T.,University of Oxford | Procter R.,Coventry University | Wherton J.,Center for Primary Care and Public Health | Sugarhood P.,East London NHS Foundation Trust | And 2 more authors.
BMC Medicine | Year: 2015

Background: We sought to define quality in telehealth and telecare with the aim of improving the proportion of patients who receive appropriate, acceptable and workable technologies and services to support them living with illness or disability. Methods: This was a three-phase study: (1) interviews with seven technology suppliers and 14 service providers, (2) ethnographic case studies of 40 people, 60 to 98 years old, with multi-morbidity and assisted living needs and (3) 10 co-design workshops. In phase 1, we explored barriers to uptake of telehealth and telecare. In phase 2, we used ethnographic methods to build a detailed picture of participants' lives, illness experiences and technology use. In phase 3, we brought users and their carers together with suppliers and providers to derive quality principles for assistive technology products and services. Results: Interviews identified practical, material and organisational barriers to smooth introduction and continued support of assistive technologies. The experience of multi-morbidity was characterised by multiple, mutually reinforcing and inexorably worsening impairments, producing diverse and unique care challenges. Participants and their carers managed these pragmatically, obtaining technologies and adapting the home. Installed technologies were rarely fit for purpose. Support services for technologies made high (and sometimes oppressive) demands on users. Six principles emerged from the workshops. Quality telehealth or telecare is 1) ANCHORED in a shared understanding of what matters to the user; 2) REALISTIC about the natural history of illness; 3) CO-CREATIVE, evolving and adapting solutions with users; 4) HUMAN, supported through interpersonal relationships and social networks; 5) INTEGRATED, through attention to mutual awareness and knowledge sharing; 6) EVALUATED to drive system learning. Conclusions: Technological advances are important, but must be underpinned by industry and service providers following a user-centred approach to design and delivery. For the ARCHIE principles to be realised, the sector requires: (1) a shift in focus from product ('assistive technologies') to performance ('supporting technologies-in-use'); (2) a shift in the commissioning model from standardised to personalised home care contracts; and (3) a shift in the design model from 'walled garden', branded products to inter-operable components that can be combined and used flexibly across devices and platforms. © 2015 Greenhalgh et al.; licensee BioMed Central.

Pratt J.J.,Royal Childrens Hospital | Khan K.S.,Center for Primary Care and Public Health
European Journal of Haematology | Year: 2016

Objective: To capture all data meeting a rigid definition of non-anaemic iron deficiency (NAID) and determine whether it is associated with poor outcomes compared with normal iron status and whether iron supplementation improves outcomes in NAID. Design: Systematic review. Data sources: EMBASE, Medline, Web of Science,, International Clinical Trials Registry Platform (ICTRP) and Central from database inception to April 2014. Eligibility criteria: Ferritin <16 μg/L (<12 μg/L if age <5 yr) in the absence of anaemia in observational studies or randomised trials. Where populations were deemed to be sufficiently similar, meta-analysis was undertaken. Results: There were 21 studies included. NAID in pregnancy associated with reduction in birthweight (P = 0.028). Iron supplementation in NAID was associated with improvement in objective scores (P = 0.005) and self-rating (P = 0.03) of fatigue. Meta-analysis was limited and, where possible, was not statistically significant including the comparison of NAID with cardiovascular function in adults (VO2max P = 0.21, RERmax P = 0.68), educational attainment in children (P = 0.14), infant mental (P = 0.29) and psychomotor (P = 0.07) development, and iron supplementation in NAID with educational attainment in language (P = 0.31). Conclusions: There is emerging evidence that NAID is a disease in its own right, deserving of further research in the development of strategies for detection and treatment. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Henderson A.J.,University of Bristol | Shaheen S.O.,Center for Primary Care and Public Health
Paediatric Respiratory Reviews | Year: 2013

Acetaminophen is a widely used medication for the treatment of pain and fever in children and pregnant women. There is substantial epidemiological evidence in adults and children that acetaminophen use is associated with asthma symptoms. There is also a considerable body of evidence that supports a modest but consistent association of acetaminophen use in pregnancy and early infancy with asthma in later childhood. This relationship is robust to adjustment for a large range of potential confounding factors and, in some studies, shows clear evidence of a dose-dependent association but the possibility of confounding by indication has remained a concern. However, the epidemiological evidence is now compelling and there is a clear need to establish causation so that appropriate advice and interventions can be developed for children at risk of asthma. This requires randomised trials of analgesics and antipyretics, including acetaminophen, in a variety of clinical settings. © 2012 Elsevier Ltd.

Shaheen S.O.,Center for Primary Care and Public Health | Macdonald-Wallis C.,University of Bristol | Lawlor D.A.,University of Bristol | Henderson A.J.,University of Bristol
European Respiratory Journal | Year: 2016

Few epidemiological studies have investigated the role of hypertensive disorders of pregnancy in the aetiology of childhood respiratory and atopic outcomes. In the Avon Longitudinal Study of Parents and Children we examined associations of maternal gestational hypertension, hypertension before pregnancy and pre-eclampsia with wheezing at 18 months, wheezing and asthma at 7 years and lung function at 8-9 years, after controlling for potential confounders (n=5322-8734, depending on outcome). Gestational hypertension was not associated with any of the outcomes. There was weak evidence for a positive association between pre-eclampsia and early wheezing (adjusted OR 1.31, 95% CI 0.94-1.82, compared to normotensive pregnancies) and for negative associations between pre-eclampsia and forced expiratory volume in 1 s (adjusted mean difference in SD score 0.14, 95% CI 0.33-0.06) and maximal mid-expiratory flow (0.15, 95% CI 0.34-0.04). Hypertension before pregnancy was positively associated with wheezing (OR 1.63, 95% CI 1.16-2.31) and asthma (OR 1.34, 95% CI 1.00-1.79). Gestational hypertension is unlikely to be a risk factor for childhood respiratory disorders; hypertension before pregnancy may be a risk factor for childhood wheezing and asthma, but this finding needs replication. Larger studies are needed to confirm whether pre-eclampsia is associated with impaired childhood lung function. © ERS 2016.

Hinder S.,Center for Primary Care and Public Health | Greenhalgh T.,Center for Primary Care and Public Health
BMC Health Services Research | Year: 2012

Background: Self-management is rarely studied 'in the wild'. We sought to produce a richer understanding of how people live with diabetes and why self-management is challenging for some. Method. Ethnographic study supplemented with background documents on social context. We studied a socio-economically and ethnically diverse UK population. We sampled 30 people with diabetes (15 type 1, 15 type 2) by snowballing from patient groups, community contacts and NHS clinics. Participants (aged 5-88, from a range of ethnic and socio-economic groups) were shadowed at home and in the community for 2-4 periods of several hours (total 88 visits, 230 hours); interviewed (sometimes with a family member or carer) about their self-management efforts and support needs; and taken out for a meal. Detailed field notes were made and annotated. Data analysis was informed by structuration theory, which assumes that individuals' actions and choices depend on their dispositions and capabilities, which in turn are shaped and constrained (though not entirely determined) by wider social structures. Results: Self-management comprised both practical and cognitive tasks (e.g. self-monitoring, menu planning, medication adjustment) and socio-emotional ones (e.g. coping with illness, managing relatives' input, negotiating access to services or resources). Self-management was hard work, and was enabled or constrained by economic, material and socio-cultural conditions within the family, workplace and community. Some people managed their diabetes skilfully and flexibly, drawing on personal capabilities, family and social networks and the healthcare system. For others, capacity to self-manage (including overcoming economic and socio-cultural constraints) was limited by co-morbidity, cognitive ability, psychological factors (e.g. under-confidence, denial) and social capital. The consequences of self-management efforts strongly influenced people's capacity and motivation to continue them. Conclusion: Self-management of diabetes is physically, intellectually, emotionally and socially demanding. Non-engagement with self-management may make sense in the context of low personal resources (e.g. health literacy, resilience) and overwhelming personal, family and social circumstances. Success of self-management as a policy solution will be affected by interacting influences at three levels: [a] at micro level by individuals' dispositions and capabilities; [b] at meso level by roles, relationships and material conditions within the family and in the workplace, school and healthcare organisation; and [c] at macro level by prevailing economic conditions, cultural norms and expectations, and the underpinning logic of the healthcare system. We propose that the research agenda on living with diabetes be extended and the political economy of self-management systematically studied. © 2012 Hinder and Greenhalgh; licensee BioMed Central Ltd.

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