PurposePatient-reported data are playing an increasing role in health care. In oncology, data from quality of life (QoL) assessment tools may be particularly important for those with limited survival prospects, where treatments aim to prolong survival while maintaining or improving QoL. This paper examines the use and impact of using QoL measures on health care of cancer patients within a clinical setting, particularly those with brain cancer. It also examines facilitators and challenges, and provides implications for policy and practice.DesignWe conducted a systematic literature review, 15 expert interviews and a consultation at an international summit.ResultsThe systematic review found no relevant intervention studies specifically in brain cancer patients, and after expanding our search to include other cancers, 15 relevant studies were identified. The evidence on the effectiveness of using QoL tools was inconsistent for patient management, but somewhat more consistent in favour of improving patient–physician communication. Interviews identified unharnessed potential and growing interest in QoL tool use and associated challenges to address.ConclusionOur findings suggest that the use of QoL tools in cancer patients may improve patient–physician communication and have the potential to improve care, but the tools are not currently widely used in clinical practice (in brain cancer nor some other cancer contexts) although they are in clinical trials. There is a need for further research and stakeholder engagement on how QoL tools can achieve most impact across cancer and patient contexts. There is also a need for policy, health professional, research and patient communities to strengthen information exchange and debate, support awareness raising and provide training on tool design, use and interpretation.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-016-1278-6) contains supplementary material, which is available to authorized users.
Networked models are often proposed as a means to enhance health research capacity‐building in Africa. This paper addresses a knowledge gap on what works and does not in capacity‐building in African research settings. It provides an analysis of how multi‐partner networks are built and how their success depends on building institutional level capacity‐strengthening within partner institutions. To do this, the paper focuses on the Wellcome Trust's African Institutions initiative, drawing on initial learning and evaluation project data. We identify priority areas for policy attention and share emerging early insights on mechanisms and strategies being implemented by consortia to address key challenges. Copyright © 2012 John Wiley & Sons, Ltd.
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BackgroundReducing avoidable harm in maternity services is a priority globally. As well as learning from mistakes, it is important to produce rigorous descriptions of ‘what good looks like’.ObjectiveWe aimed to characterise features of safety in maternity units and to generate a plain language framework that could be used to guide learning and improvement.MethodsWe conducted a multisite ethnography involving 401 hours of non-participant observations 33 semistructured interviews with staff across six maternity units, and a stakeholder consultation involving 65 semistructured telephone interviews and one focus group.ResultsWe identified seven features of safety in maternity units and summarised them into a framework, named For Us (For Unit Safety). The features include: (1) commitment to safety and improvement at all levels, with everyone involved; (2) technical competence, supported by formal training and informal learning; (3) teamwork, cooperation and positive working relationships; (4) constant reinforcing of safe, ethical and respectful behaviours; (5) multiple problem-sensing systems, used as basis of action; (6) systems and processes designed for safety, and regularly reviewed and optimised; (7) effective coordination and ability to mobilise quickly. These features appear to have a synergistic character, such that each feature is necessary but not sufficient on its own: the features operate in concert through multiple forms of feedback and amplification.ConclusionsThis large qualitative study has enabled the generation of a new plain language framework—For Us—that identifies the behaviours and practices that appear to be features of safe care in hospital-based maternity units.
BackgroundIn 2008, the National Institute for Health Research (NIHR) in England established nine Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) to develop partnerships between universities and local NHS organisations focused on improving patient outcomes through the conduct and application of applied health research.ObjectivesThe study explored how effectively the CLAHRCs supported the ‘translation’ of research into patient benefit, and developed ways of doing applied research that maximised its chances of being useful to the service and the capacity of the NHS to respond. It focused on three issues: (1) how the NHS influenced the CLAHRCs, and vice versa; (2) how effective multistakeholder and multidisciplinary research and implementation teams were built in the CLAHRCs; (3) how the CLAHRCs supported the use of research knowledge to change commissioning and clinical behaviour for patient benefit.MethodsThe study adopted an adaptive and emergent approach and incorporated a formative evaluation. An initial phase mapped the landscape of all nine CLAHRCs and the context within which they were established, using document analysis, workshops and interviews, and a literature review. This mapping exercise identified the three research questions that were explored in phase 2 through a stakeholder survey of six CLAHRCs, in-depth case studies of two CLAHRCs, validation interviews with all nine CLAHRCs and the NIHR, and document review.Results(1) The local remit and the requirement for matched NHS funding enhanced NHS influence on the CLAHRCs. The CLAHRCs achieved positive change among those most directly involved, but the larger issue of whether or not the CLAHRCs can influence others in and across the NHS remains unresolved. (2) The CLAHRCs succeeded in engaging different stakeholder groups, and explored what encouraged specific groups to become involved. Being responsive to people’s concerns and demonstrating ‘quick wins’ were both important. (3) There was some evidence that academics were becoming more interested in needs-driven research, and that commissioners were seeing the CLAHRCs as a useful source of support. A growing number of completed projects had demonstrated an impact on clinical practice.ConclusionsThe CLAHRCs have included NHS decision-makers in research and researchers in service decision-making, and encouraged research-informed practice. All the CLAHRCs (as collaborations) adopted relationship models. However, as the complexities of the challenges they faced became clearer, it became obvious that a focus on multidisciplinary relationships was necessary, but not sufficient on its own. Attention also has to be paid to the systems within and through which these relationships operate.Recommendations for researchFuture research should compare areas with an Academic Health Science Network (AHSN) and a CLAHRC with areas with just an AHSN, to understand the difference CLAHRCs make. There should be work on understanding implementation, such as the balancing of rigour and relevance in intervention studies; systemic barriers to and facilitators of implementation; and tailoring improvement interventions. There is also a need to better understand the factors that support the explicit use of research evidence across the NHS, and the processes and mechanisms that support the sustainability and scale-up of implementation projects. Research should place emphasis on examining the role of patient and public involvement in CLAHRCs and of the relation between CLAHRCs and NHS commissioners.FundingThe NIHR Health Services and Delivery Research programme.
Increasing policy demand for realist evaluations of research and capacity-building programmes reflects a recognition of the management, governance and impact gains that can result from evaluation. However, the evidence base on how to successfully implement realist evaluations of complex interventions in international development efforts is scarce. We know little about the associated merits, limitations and ways to mitigate challenges. There is a need for reflective work which considers the methodology in context. This paper shares learning from the experience of conducting a realist, theory-of-change driven evaluation of the African Institutions Initiative, a Wellcome Trust funded programme which aimed to build sustainable health research capacity in Africa at institutional and network levels, across seven research consortia.We reflect on the key challenges experienced throughout the evaluation and recommend ways of managing them, highlight opportunities and critical success factors associated with this evaluation approach, as well as elaborate on alternative evaluation approaches.
Healthcare systems with limited resources face rising demand pressures. Healthcare decision-makers increasingly recognise the potential of innovation to help respond to this challenge and to support high-quality care. However, comprehensive and actionable evidence on how to realise this potential is lacking. We adopt sociotechnical systems and innovation systems theoretical perspectives to examine conditions that can support and sustain innovating healthcare systems. We use primary data focussing on England (with 670 contributions over time) and triangulate findings against globally-relevant literature. We discuss the complexity of factors influencing an innovating healthcare system’s ability to support the development and uptake of innovations and share practical learning about changes in policy, culture, and behaviour that could support system improvement. Three themes are examined in detail: skills, capabilities, and leadership; motivations and accountabilities; and collaboration and coordination. We also contribute to advancing applications of sociotechnical systems thinking to major societal transformation challenges.
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