End-of-life policies are hotly debated in many countries, with international evidence frequently used to support or oppose legal reforms. Existing reviews are limited by their focus on specific practices or selected jurisdictions. The objective is to review international time trends in end-of-life practices.
We conducted a systematic review of empirical studies on medical end-of-life practices, including treatment withdrawal, the use of drugs for symptom management, and the intentional use of lethal drugs. A search strategy was conducted in MEDLINE, EMBASE, Web of Science, Sociological Abstracts, PAIS International, Worldwide Political Science Abstracts, International Bibliography of the Social Sciences and CINAHL. We included studies that described physicians’ actual practices and estimated annual frequency at the jurisdictional level. End-of-life practice frequencies were analyzed for variations over time, using logit regression.
Among 8183 references, 39 jurisdiction-wide surveys conducted between 1990 and 2010 were identified. Of those, 22 surveys used sufficiently similar research methods to allow further statistical analysis. Significant differences were found across surveys in the frequency of treatment withdrawal, use of opiates or sedatives and the intentional use of lethal drugs (X2 > 1000, p < 0.001 for all). Regression analyses showed increased use of opiates and sedatives over time (p < 0.001), which could reflect more intense symptom management at the end of life, or increase in these drugs to intentionally cause patients’ death.
The use of opiates and sedatives appears to have significantly increased over time between 1990 and 2010. Better distinction between practices with different legal status is required to properly interpret the policy significance of these changes. Research on the effects of public policies should take a comprehensive look at trends in end-of-life practice patterns and their associations with policy changes.
End-of-life practice; Treatment withdrawal; Aid in dying; Assisted suicide; Euthanasia
The English health system experienced a large-scale reorganisation in April 2013. A national tri-partite delivery framework involving the Department of Health, NHS England and Public Health England was agreed and a new local operational model applied. Evidence about how health system re-organisations affect constituent public health programmes is sparse and focused on low and middle income countries. We conducted an in-depth analysis of how the English immunisation programme adapted to the April 2013 health system reorganisation, and what facilitated or hindered the delivery of immunisation services in this context.
A qualitative case study methodology involving interviews and observations at national and local level was applied. Three sites were selected to represent different localities, varying levels of immunisation coverage and a range of changes in governance. Study participants included 19 national decision-makers and 56 local implementers. Two rounds of interviews and observations (immunisation board/committee meetings) occurred between December 2014 and June 2015, and September and December 2015. Interviews were audio recorded and transcribed verbatim and written accounts of observed events compiled. Data was imported into NVIVO 10 and analysed thematically.
The new immunisation programme in the new health system was described as fragmented, and significant effort was expended to regroup. National tripartite arrangements required joint working and accountability; a shift from the simpler hierarchical pre-reform structure, typical of many public health programmes. New local inter-organisational arrangements resulted in ambiguity about organisational responsibilities and hindered data-sharing. Whilst making immunisation managers responsible for larger areas supported equitable resource distribution and strengthened service commissioning, it also reduced their ability to apply clinical expertise, support and evaluate immunisation providers’ performance. Partnership working helped staff adapt, but the complexity of the health system hindered the development of consistent approaches for training and service evaluation.
The April 2013 health system reorganisation in England resulted in significant fragmentation in the way the immunisation programme was delivered. Some of this was a temporary by-product of organisational change, other more persistent challenges were intrinsic to the complex architecture of the new health system. Partnership working helped immunisation leaders and implementers reconnect and now the challenge is to assess how inter-agency collaboration can be strengthened.
Electronic supplementary material
The online version of this article (doi:10.1186/s12913-016-1711-0) contains supplementary material, which is available to authorized users.
Delivery of health services; Health reforms; Immunisation; Organisational change; Public health; Qualitative research
Reorganisation of healthcare services into networks of clinical experts is increasing as a strategy to promote the uptake of evidence based practice and to improve patient care. This is reflected in significant financial investment in clinical networks. However, there is still some question as to whether clinical networks are effective vehicles for quality improvement. The aim of this systematic review was to ascertain the effectiveness of clinical networks and identify how successful networks improve quality of care and patient outcomes.
A systematic search was undertaken in accordance with the PRISMA approach in Medline, Embase, CINAHL and PubMed for relevant papers between 1 January 1996 and 30 September 2014. Established protocols were used separately to examine and assess the evidence from quantitative and qualitative primary studies and then integrate findings.
A total of 22 eligible studies (9 quantitative; 13 qualitative) were included. Of the quantitative studies, seven focused on improving quality of care and two focused on improving patient outcomes. Quantitative studies were limited by a lack of rigorous experimental design. The evidence indicates that clinical networks can be effective vehicles for quality improvement in service delivery and patient outcomes across a range of clinical disciplines. However, there was variability in the networks’ ability to make meaningful network- or system-wide change in more complex processes such as those requiring intensive professional education or more comprehensive redesign of care pathways. Findings from qualitative studies indicated networks that had a positive impact on quality of care and patients outcomes were those that had adequate resources, credible leadership and efficient management coupled with effective communication strategies and collaborative trusting relationships.
There is evidence that clinical networks can improve the delivery of healthcare though there are few high quality quantitative studies of their effectiveness. Our findings can provide policymakers with some insight into how to successfully plan and implement clinical networks by ensuring strong clinical leadership, an inclusive organisational culture, adequate resourcing and localised decision-making authority.
Electronic supplementary material
The online version of this article (doi:10.1186/s12913-016-1615-z) contains supplementary material, which is available to authorized users.
Clinical networks; Delivery of healthcare; Health system planning; Organisation of healthcare; Health services; Implementation science; Quality improvement
The increased demand for evidence-based practice in health policy in recent years has provoked a parallel increase in diverse evidence-based outputs designed to translate knowledge from researchers to policy makers and practitioners. Such knowledge translation ideally creates user-friendly outputs, tailored to meet information needs in a particular context for a particular audience. Yet matching users’ knowledge needs to the most suitable output can be challenging. We have developed an evidence synthesis framework to help knowledge users, brokers, commissioners and producers decide which type of output offers the best ‘fit’ between ‘need’ and ‘response’. We conducted a four-strand literature search for characteristics and methods of evidence synthesis outputs using databases of peer reviewed literature, specific journals, grey literature and references in relevant documents. Eight experts in synthesis designed to get research into policy and practice were also consulted to hone issues for consideration and ascertain key studies. In all, 24 documents were included in the literature review. From these we identified essential characteristics to consider when planning an output—Readability, Relevance, Rigour and Resources—which we then used to develop a process for matching users’ knowledge needs with an appropriate evidence synthesis output. We also identified 10 distinct evidence synthesis outputs, classifying them in the evidence synthesis framework under four domains: key features, utility, technical characteristics and resources, and in relation to six primary audience groups—professionals, practitioners, researchers, academics, advocates and policy makers. Users’ knowledge needs vary and meeting them successfully requires collaborative planning. The Framework should facilitate a more systematic assessment of the balance of essential characteristics required to select the best output for the purpose.
Communication research into policy; evidence into policy; knowledge
To investigate patients’ experiences of the choice of general practitioner (GP) practice pilot.
Mixed-method, cross-sectional study.
Patients in the UK National Health Service (NHS) register with a general practice responsible for their primary medical care and practices set geographic boundaries. In 2012/2013, 43 volunteer general practices in four English NHS primary care trusts (PCTs) piloted a scheme allowing patients living outside practice boundaries to register as an out of area patient or be seen as a day patient.
Analysis of routine data for 1108 out of area registered patients and 250 day patients; postal survey of out of area registered (315/886, 36%) and day (64/188, 34%) patients over 18 years of age, with a UK mailing address; comparison with General Practice Patient Survey (GPPS); semistructured interviews with 24 pilot patients.
Pilot patients were younger and more likely to be working than non-pilot patients at the same practices and reported generally more or at least as positive experiences than patients registered at the same practices, practices in the same PCT and nationally, despite belonging to subgroups of the population who typically report poorer than average experiences. Out of area patients who joined a pilot practice did so: after moving house and not wanting to change practice (26.2%); for convenience (32.6%); as newcomers to an area who selected a practice although they lived outside its boundary (23.6%); because of dissatisfaction with their previous practice (13.9%). Day patients attended primarily on grounds of convenience (68.8%); 51.6% of the day patient visits were for acute infections, most commonly upper respiratory infections (20.4%). Sixty-six per cent of day patients received a prescription during their visit.
Though the 12-month pilot was too brief to identify all costs and benefits, the scheme provided a positive experience for participating patients and practices.
primary health care; practice boundaries; access; choice
To examine the work of commissioning care for people with long-term conditions and the factors inhibiting or facilitating commissioners making service change.
Multisite mixed methods case study research, combining qualitative analysis of interviews, documents and observation of meetings.
Primary care trust managers and clinicians, general practice-based commissioners, National Health Service trust and foundation trust senior managers and clinicians, voluntary sector and local government representatives.
Three ‘commissioning communities’ (areas covered by a primary care trust) in England, 2010–2012.
Commissioning services for people with long-term conditions was a long drawn-out process involving a range of activities and partners. Only some of the activities undertaken by commissioners, such as assessment of local health needs, coordination of healthcare planning and service specification, appeared in the official ‘commissioning cycle’ promoted by the Department of Health. Commissioners undertook a significant range of additional activities focused on reviewing and redesigning services and providing support for implementation of new services. These activities often involved partnership working with providers and other stakeholders and appeared to be largely divorced from contracting and financial negotiations. At least for long-term condition services, the time and effort involved in such work appeared to be disproportionate to the anticipated or likely service gains. Commissioners adopting an incremental approach to service change in defined and manageable areas of work appeared to be more successful in terms of delivering planned changes in service delivery than those attempting to bring about wide-scale change across complex systems.
Commissioning for long-term condition services challenges the conventional distinction between commissioners and providers with a significant amount of work focused on redesigning services in partnership with providers. Such work is labour-intensive and potentially unsustainable at a time of reduced finances. New clinical commissioning groups will need to determine how best to balance the relational and transactional elements of commissioning.
Health Services Administration & Management; Qualitative Research
Since 1991, there has been a series of reforms of the English National Health Service (NHS) entailing an increasing separation between the commissioners of services and a widening range of public and independent sector providers able to compete for contracts to provide services to NHS patients. We examine the extent to which local commissioners had adopted a market-oriented (transactional) model of commissioning of care for people with long term conditions several years into the latest period of market-oriented reform. The paper also considers the factors that may have inhibited or supported market-oriented behaviour, including the presence of conditions conducive to a health care quasi-market.
We studied the commissioning of services for people with three long term conditions - diabetes, stroke and dementia - in three English primary care trust (PCT) areas over two years (2010-12). We took a broadly ethnographic approach to understanding the day-to-day practice of commissioning. Data were collected through interviews, observation of meetings and from documents.
In contrast to a transactional, market-related approach organised around commissioner choice of provider and associated contracting, commissioning was largely relational, based on trust and collaboration with incumbent providers. There was limited sign of commissioners significantly challenging providers, changing providers, or decommissioning services.
In none of the service areas were all the conditions for a well functioning quasi-market in health care in place. Choice of provider was generally absent or limited; information on demand and resource requirements was highly imperfect; motivations were complex; and transaction costs uncertain, but likely to be high. It was difficult to divide care into neat units for contracting purposes. As a result, it is scarcely surprising that commissioning practice in relation to all six commissioning developments was dominated by a relational approach.
Our findings challenge the notion of a strict separation of commissioners and providers, and instead demonstrate the adaptive persistence of relational commissioning based on continuity of provision, trust and interdependence between commissioners and providers, at least for services for people with long-term conditions.
The publication of Best research for best health in 2006 and the “ring-fencing” of health research funding in England marked the start of a period of change for health research governance and the structure of research funding in England. One response to bridging the ‘second translational gap’ between research knowledge and clinical practice was the establishment of nine Collaborations for Leadership in Applied Health Research and Care (CLAHRCs). The goal of this paper is to assess how national-level understanding of the aims and objectives of the CLAHRCs translated into local implementation and practice in North West London.
This study uses a variation of Goffman’s frame analysis to trace the development of the initial national CLAHRC policy to its implementation at three levels. Data collection and analysis were qualitative through interviews, document analysis and embedded research.
Analysis at the macro (national policy), meso (national programme) and micro (North West London) levels shows a significant common understanding of the aims and objectives of the policy and programme. Local level implementation in North West London was also consistent with these.
The macro-meso-micro frame analysis is a useful way of studying the transition of a policy from high-level idea to programme in action. It could be used to identify differences at a local (micro) level in the implementation of multi-site programmes that would help understand differences in programme effectiveness.
Policy implementation; Policy analysis; Frame analysis; Knowledge translation; Health services research; Translational gap
Is happening slowly but not necessarily surely
Health research systems consist of diverse groups who have some role in health research, but the boundaries around such a system are not clear-cut. To explore what various stakeholders need we reviewed the literature including that on the history of English health R&D reforms, and we also applied some relevant conceptual frameworks.
We first describe the needs and capabilities of the main groups of stakeholders in health research systems, and explain key features of policymaking systems within which these stakeholders operate in the UK. The five groups are policymakers (and health care managers), health professionals, patients and the general public, industry, and researchers. As individuals and as organisations they have a range of needs from the health research system, but should also develop specific capabilities in order to contribute effectively to the system and benefit from it.
Second, we discuss key phases of reform in the development of the English health research system over four decades - especially that of the English Department of Health's R&D system - and identify how far legitimate demands of key stakeholder interests were addressed.
Third, in drawing lessons we highlight points emerging from contemporary reports, but also attempt to identify issues through application of relevant conceptual frameworks. The main lessons are: the importance of comprehensively addressing the diverse needs of various interacting institutions and stakeholders; the desirability of developing facilitating mechanisms at interfaces between the health research system and its various stakeholders; and the importance of additional money in being able to expand the scope of the health research system whilst maintaining support for basic science.
We conclude that the latest health R&D strategy in England builds on recent progress and tackles acknowledged weaknesses. The strategy goes a considerable way to identifying and more effectively meeting the needs of key groups such as medical academics, patients and industry, and has been remarkably successful in increasing the funding for health research. There are still areas that might benefit from further recognition and resourcing, but the lessons identified, and progress made by the reforms are relevant for the design and coordination of national health research systems beyond England.
In 2001, the New Zealand government introduced its Primary Health Care Strategy (PHCS), aimed at strengthening the role of primary health care, in order to improve health and to reduce inequalities in health. As part of the Strategy, new funding was provided to reduce the fees that patients pay when they use primary health care services in New Zealand, to improve access to services and to increase service use. In this article, we estimate the impact of the new funding on general practitioner and practice nurse visit fees paid by patients and on consultation rates. The analyses involved before-and-after monitoring of fees and consultation rates in a random sample of 99 general practices and covered the period from June 2001 (pre-Strategy) to mid-2005.
Fees fell particularly in Access (higher need, higher per capita funded) practices over time for doctor and nurse visits. Fees increased over time for many in Interim (lower need, lower per capita funded) practices, but they fell for patients aged 65 years and over as new funding was provided for this age group. There were increases in consultation rates across almost all age, funding model (Access or Interim), socio-demographic and ethnic groups. Increases were particularly high in Access practices.
The Strategy has resulted in lower fees for primary health care for many New Zealanders, and consultation rates have also increased over the past few years. However, fees have not fallen by as much as expected in government policy given the amount of extra public money spent since there are limited requirements for practices to reduce patients' fees in line with increases in public funding for primary care.
Research synthesis has an important role supporting the transfer of knowledge between researchers and healthcare decision-makers. But if our goal is to make knowledge more useable and context specific, then extending the scope of systematic reviews or producing syntheses with policy makers and managers may be insufficient. Dialogues, partnerships and reinterpretations of evidence in context will help us achieve this goal.
Attempts to make New Zealand's health care more equitable have resulted in rapid change. But the reforms are largely untested and their effects difficult to predict
Researchers are increasingly required to describe the impact of their work, e.g. in grant proposals, project reports, press releases and research assessment exercises. Specialised impact assessment studies can be difficult to replicate and may require resources and skills not available to individual researchers. Researchers are often hard-pressed to identify and describe research impacts and ad hoc accounts do not facilitate comparison across time or projects.
The Research Impact Framework was developed by identifying potential areas of health research impact from the research impact assessment literature and based on research assessment criteria, for example, as set out by the UK Research Assessment Exercise panels. A prototype of the framework was used to guide an analysis of the impact of selected research projects at the London School of Hygiene and Tropical Medicine. Additional areas of impact were identified in the process and researchers also provided feedback on which descriptive categories they thought were useful and valid vis-à-vis the nature and impact of their work.
We identified four broad areas of impact:
I. Research-related impacts;
II. Policy impacts;
III. Service impacts: health and intersectoral and
IV. Societal impacts.
Within each of these areas, further descriptive categories were identified. For example, the nature of research impact on policy can be described using the following categorisation, put forward by Weiss:
Instrumental use where research findings drive policy-making;
Mobilisation of support where research provides support for policy proposals;
Conceptual use where research influences the concepts and language of policy deliberations and
Redefining/wider influence where research leads to rethinking and changing established practices and beliefs.
Researchers, while initially sceptical, found that the Research Impact Framework provided prompts and descriptive categories that helped them systematically identify a range of specific and verifiable impacts related to their work (compared to ad hoc approaches they had previously used). The framework could also help researchers think through implementation strategies and identify unintended or harmful effects. The standardised structure of the framework facilitates comparison of research impacts across projects and time, which is useful from analytical, management and assessment perspectives.
General practitioners are being asked to retake responsibility for commissioning healthcare services. What can we learn from previous experience?
Objectives: To evaluate the reported achievements of the 52 first wave total purchasing pilot schemes in 1996-7 and the factors associated with these; and to consider the implications of these findings for the development of the proposed primary care groups.
Design: Face to face interviews with lead general practitioners, project managers, and health authority representatives responsible for each pilot; and analysis of hospital episode statistics.
Setting: England and Scotland for evaluation of pilots; England only for consideration of implications for primary care groups.
Main outcome measures: The ability of total purchasers to achieve their own objectives and their ability specifically to achieve objectives in the service areas beyond fundholding included in total purchasing.
Results: The level of achievement between pilots varied widely. Achievement was more likely to be reported in primary than in secondary care. Reported achievements in reducing length of stay and emergency admissions were corroborated by analysis of hospital episode statistics. Single practice and small multipractice pilots were more likely than large multipractice projects to report achieving their objectives. Achievements were also associated with higher direct management costs per head and the ability to undertake independent contracting. Large multipractice pilots required considerable organisational development before progress could be made.
Conclusion: The ability to create effective commissioning organisations the size of the proposed primary care groups should not be underestimated. To be effective commissioners, these care groups will need to invest heavily in their organisational development and in the short term are likely to need an additional development budget rather than the reduction in spending on NHS management that is planned by the government.
Key messages The level of reported achievement between the total purchasing pilots in 1996-7 varied widely; achievement was more likely to occur in primary than in secondary care Single practice and small multipractice pilots were more likely than large multipractice pilots to report achieving their objectives in 1996/97; achievements were also associated with higher direct management costs per head Large multipractice pilots needed more time for organisational development before progress could be made Difficulties in creating effective commissioning organisations the size of the proposed primary care groups should not be underestimated Primary care groups will need to invest heavily in organisational development and are likely to need an additional development budget in the short term