Widening the debate? Consultation and participation in local health care planning in the English and Swedish health services.

In both English and Swedish health care, there is currently much interest in encouraging public consultation and participation in public service planning in order to improve quality, enhance local accountability, and help to inform and legitimize difficult decisions about health care priorities. This article explores the progress of local budget holders for health services in the two countries--primary care groups/trusts in England and county councils and municipalities in Sweden--in developing consultative and participative processes. Using secondary and primary research methods, the study identified much activity among English primary care groups/trusts, although with less certainty of outcome. In Sweden, initiatives were limited to a few county councils, were more distinctive, and in the case of one county council, resulted in the sustained channeling of citizens' views. In comparing and contrasting the approaches in the two countries, the authors note the importance of political cultures and institutional arrangements as well as, more generally, the complexities and challenges of consultation and participation in health care planning.     

What do hospital decision-makers in Ontario,Canada, have to say about the fairness of priority setting in their institutions?

Background  

Priority setting, also known as rationing or resource allocation, occurs at all levels of every health care system. Daniels and Sabin have proposed a framework for priority setting in health care institutions called 'accountability for reasonableness', which links priority setting to theories of democratic deliberation. Fairness is a key goal of priority setting. According to 'accountability for reasonableness', health care institutions engaged in priority setting have a claim to fairness if they satisfy four conditions of relevance, publicity, appeals/revision, and enforcement. This is the first study which has surveyed the views of hospital decision makers throughout an entire health system about the fairness of priority setting in their institutions. The purpose of this study is to elicit hospital decision-makers' self-report of the fairness of priority setting in their hospitals using an explicit conceptual framework, 'accountability for reasonableness'.     

Citizens and rationing: analysis of a European survey

While many studies have reviewed the issues involved in rationing and priority setting within health care services, few studies have comprehensively analysed the views and attitudes of a significant stakeholder in the debate - the public. The aims of this paper are to discuss the issues involved in involving the public in rationing and priority setting decision-making; and to analyse data pertaining to citizen's attitudes towards rationing and priority setting. The data analysed were taken from the 1998 Eurobarometer Survey, with specific questions pertaining to rationing and priority setting asked in six countries within the European Union: Germany; France; Italy; the Netherlands; Britain and Sweden. The review of previous studies and the analysis of the Eurobarometer data, focus on issues relating to funding for health care; the need to set limits in health coverage; the role of stakeholders in setting priorities; and the use of age, and other factors, as a criteria for setting priorities.     

General practice care and patients' priorities in Europe: an international comparison.

Insight into patients' priorities with respect to health care should complement the views of professionals and policy makers on what is thought to be appropriate health care. To determine the strengths and weaknesses of general practice care from patients' perspectives written surveys were performed among patients in Denmark, Germany, Israel, Netherlands, Norway, Portugal, Sweden and United Kingdom (n = 3540). The potential quality problems identified were spread over the different countries: the low involvement of general practitioners in out-of-hours services in Portugal; the low provision of routine screening in Sweden, Norway and The Netherlands; the lack of a defined patient population in Germany; the lack of a formal gatekeeper role to secondary care in general practice in Germany and Sweden; and the low number of home visits in Sweden.     

Fairness and accountability for reasonableness. Do the views of priority setting decision makers differ across health systems and levels of decision making?

Accountability for reasonableness is an ethical framework for fair priority setting process. This framework has been used to evaluate fairness in several contexts, and a few studies have evaluated its acceptability to decision makers. However, no studies have compared the acceptability of the four conditions of the framework to decision makers across health systems and levels of priority setting. This paper reports the elements of fairness described by 184 decision makers involved in priority setting at the macro-, meso- and micro-levels of priority setting in the Canadian (Ontario), Norwegian and Ugandan health care systems and compares them against the four conditions of ‘Accountability for Reasonableness’ and across levels of decision making, and health care systems.     

Patients' priorities with respect to general practice care: an international comparison

Background and objectives. Improving the sensitivity of generalpractice to Patients' needs demands a good understanding ofPatients' expectations and priorities in care provision. Insightinto differences in expectations of patients in different culturesand health care systems may support decision-making on desirablemodels for care provision in general practice. An internationalstudy was conducted to determine priorities of patients in generalpractice care: which views do patients in different countrieshave in common and which views differ? Methods. Written surveys in general practices in the UK, Norway,Sweden, Denmark, The Netherlands, Germany, Portugal and Israelwere performed. Samples of patients from at least 12 practicesper country, stratified according to area and type of practice,were included. Patients rated the importance of 38 differentaspects of general practice care, selected on the basis of literatureanalysis, qualitative studies and consensus discussions. Rankingsbetween countries were compared. Results. A total number of 3540 patients (response rate on average55%) completed the questionnaire. Patients in different countrieshad many opinions in common. Aspects that got the highest rankingwere: getting enough time during the consultation; quick servicesin case of emergencies; confidentiality of information on patients;telling patients all they want to know about their illness;making patients feel free to talk about their problems; GPsgoing to courses regularly; and offering preventive services.However, differences between opinions of patients in differentcountries were also found for some of the selected aspects.A confounding effect of Patients' characteristics may have playeda role in these differences. Discussion. The study provides information on what patientsexpect of and value in general practice care. It shows thatpatients in different cultures and health care systems may havedifferent views on some aspects of care, but most of all thatthey have many views in common, particularly as far as doctor–patientcommunication and accessibility of services are concerned. Keywords. Doctor–patient communication, general practice care, international comparison, Patients' expectations, Patients' priorities..     

Planning for the end of life: the views of older people about advance care statements

Advance statements about medical care have been heralded by some as a solution to the problem of end of life decision making for people not able to participate in discussions about their care. Since death is now most likely to occur at the end of a long life, it is important to understand the views and values which older people express in relation to these. This paper reports on a study which used focus groups to explore older people's views about advance statements and the role these might play in end of life care decisions. Participants were 32 older people or their representatives who belonged to six diverse community groups in Sheffield, UK. Advance statements were understood primarily in terms of their potential to aid personal integrity and to help the families of older people by reducing the perceived 'burden' of their decision making. However, concerns were expressed about the perceived link between advance care statements and euthanasia, their future applicability, and the possibility that preferences for care may change. Participants also reported worries and difficulties related to thinking about and discussing death and dying. Trust between doctor and patient, built up over time, was perceived to be important in creating an environment in which the communication necessary to underpin advance care planning could take place. Lastly, participants did not perceive that during dying they would be ready necessarily to adhere to an advance statement and 'disengage' from their lives. We conclude that, rather than emphasising the completion of advance statements, it may be preferable to conceptualise advance care planning as a process of discussion and review between clinicians, patients and families.     

What health care services does the public want and who should decide? Ask them!

Most of the parties involved in healthcare decisions – governments, politicians, healthcare professionals, pharmaceutical companies, special interest groups – actively work to make their desires known. In Israel the public is part of the decision committee; in Germany health care decision are made more or less without the public being involved. In a recently published IJHPR article, Giora Kaplan and Orna Baron-Epel raise the question of how well acquainted senior decision makers in the Israeli health system are with the public’s priorities regarding the services being considered for inclusion in the public funding list. This commentary speculates about the reasons for the discrepancies found in that article between the decision makers’ and the public’s view. Furthermore, it reports on survey results from Germany about who should be part of the decision making committee and briefly touches upon the situation in other OECD countries. While public opinion may not be the determining factor, all authors advocate a strengthening of the public’s contribution to the health care decision making process, including steps to make decision makers aware of public priorities on an ongoing basis.     

Accessibility and the Canadian health care system: squaring perceptions and realities

The 1984 Canada Health Act (CHA) is the major piece of Federal legislation that governs health care accessibility in the provinces and territories. According to the CHA, all provinces and territories in Canada must uphold five principles in order to receive federal funding for health care (universality, comprehensiveness, portability, public administration, and accessibility). In Canada, there are competing views among policy makers and consumers about how the CHA's principle of accessibility should be defined, interpreted and used in delivering health care. During the 1990s, the health care perceptions of Canadians and their health care behaviours were measured through both public opinion polls and Statistics Canada's National Population Health Survey (NPHS). The goal of this paper is to examine perceptions of accessibility in public opinion polls and actual accessibility as measured through the NPHS. Public opinion polls demonstrate that while Canadians want to preserve the principles of the CHA, a majority of Canadians are losing confidence in their health care system. In contrast, the results from the NPHS reveal that only 6% of Canadians aged 25 years and older have experienced accessibility problems. Among those who report access problems, the barriers to accessibility are linked to specific socio-economic, socio-demographic and health characteristics of individuals. We discuss these findings in the context of the current debates surrounding accessibility within the CHA and the Canadian health care system.     

Decision makers' views on health care objectives and budget constraints: results from a pilot study

Economic evaluations aim to inform policy makers about the costs and effects of medical interventions to support their decisions on the allocation of health care resources. Decision makers combine information on cost-effectiveness with their preferences and with possible constraints for the allocation of health care resources. That is, decision makers need to specify an optimality criterion and all possible (budget) constraints. Usually this is a more or less implicit process. The aim of our pilot study was to find out whether decision makers consider the objectives and budget constraints we selected for a theoretical model of resource allocation relevant, and to set priorities for these objectives.     

Health care technology in Sweden

Health care in Sweden is a public sector responsibility and equity in access to care is quite important. The Swedish system is organized into several levels, with the Federation of County Councils at the top, and with regional, county, and local levels. In theory, the four hospital tiers developed by these different levels provide a clear hierarchy for acquisition of sophisticated new technologies. In practice, certain problems have emerged, especially rigidity of the system. Reforms are underway. Sweden was one of the first countries to become involved in the assessment of health care technology. From the beginning, technologies were assessed to determine if they were 'consistent with proven scientific knowledge and good experience'. Sweden has a national program in health care technology assessment (TA), and TA is increasingly visible to policy makers and physicians. Health care TA has been effectively institutionalized in Sweden and has a bright future. The greatest problem in the Swedish context is the large number of unassessed technologies. Because of this, international cooperation is essential.     

Priority Setting and Patient Adaptation to Disability and Illness: Outcomes of a Qualitative Study

The study examined the question of who should make decisions for a National Health Scheme about the allocation of health resources when the health states of beneficiaries could change because of adaptation. Eight semi-structured small group discussions were conducted. Following focus group theory, interviews commenced with general questions followed by transition questions and ended with a ‘focus’ or ‘key’ question. Participants were presented with several scenarios in which patients adapted to their health states. They were then asked their views about the appropriate role of the public, patients and health professionals in making social judgements of quality of life. After discussion and debate, all groups were asked the key question: ‘In light of adaptation, who should evaluate quality of life for the purpose of setting priorities in the allocation of health care?’ In all groups participants presented strong arguments for and against decision making by patients, the public and health professionals. However, most groups thought a representative body which included a range of perspectives should make the relevant judgements. This is at odds with the recommendations in most national pharmaceutical guidelines. The main conclusion of the paper is that health economists and other researchers should explore the possibility of adopting a deliberative, consensus-based approach to evaluating health-related quality of life when such judgements are to be used to inform priority setting in a public system.     

Public involvement in the priority setting activities of a wait time management initiative: a qualitative case study

Background  

As no health system can afford to provide all possible services and treatments for the people it serves, each system must set priorities. Priority setting decision makers are increasingly involving the public in policy making. This study focuses on public engagement in a key priority setting context that plagues every health system around the world: wait list management. The purpose of this study is to describe and evaluate priority setting for the Ontario Wait Time Strategy, with special attention to public engagement.     

Health care utilization and attitudes to health care before and after development work in a health centre. Results from two independent postal surveys

In development work at the V?nn?s Primary Health Care Centre (VPHCC) in northern Sweden, attitudes towards and the use of health care were studied from 1977 to 1979. Mail questionnaires were sent to random and independent samples of V?nn?s inhabitants to collect data. A relative increase in the health centre physician consultancy rate was found when it was compared to other health care facilities. No change was seen in hospital utilization. Attitudes towards health information and health care accessibility were more positive after the development work. No change in attitudes to quality of health care as such was seen. The changes implemented at the VPHCC seemed to be a major cause for the results obtained as no such change was seen in the catchment area of the reference health centre.     

Setting priorities in health care organizations: criteria, processes, and parameters of success

Background

Hospitals and regional health authorities must set priorities in the face of resource constraints. Decision-makers seek practical ways to set priorities fairly in strategic planning, but find limited guidance from the literature. Very little has been reported from the perspective of Board members and senior managers about what criteria, processes and parameters of success they would use to set priorities fairly.

Discussion

We facilitated workshops for board members and senior leadership at three health care organizations to assist them in developing a strategy for fair priority setting. Workshop participants identified 8 priority setting criteria, 10 key priority setting process elements, and 6 parameters of success that they would use to set priorities in their organizations. Decision-makers in other organizations can draw lessons from these findings to enhance the fairness of their priority setting decision-making.

Summary

Lessons learned in three workshops fill an important gap in the literature about what criteria, processes, and parameters of success Board members and senior managers would use to set priorities fairly.     

Towards Cost-Value Analysis in Health Care?

By describing societal value judgements in health care in numerical terms one may in theory increase the precision of guidelines for priority setting and allow decision makers to judge more accurately the degree to which different health care programs provide societal value for money. However, valuing health programs in terms of QALYs disregards salient societal concerns for fairness in resource allocation. A different kind of numerical valuation of medical interventions, that incorporates concerns for fairness, is described. The usefulness to decision makers of such numerical information remains to be tested. This revised version was published online in August 2006 with corrections to the Cover Date.     

Priority setting for new technologies in medicine: A transdisciplinary study

Background  

Decision makers in health care organizations struggle with how to set priorities for new technologies in medicine. Traditional approaches to priority setting for new technologies in medicine are insufficient and there is no widely accepted model that can guide decision makers.     

The Fortune 500 on health care. Most top executives want to set the market free

The nature of the American health care marketplace is in a state of flux and refinement. The recent attempt by the federal government to change the health care system has brought these issues to the forefront of public and private discourse. This research endeavor examines if these discussions influenced health care decisions by some of the nation's most influential decision makers.     

Identifying research priorities in long term care homes

Concerns about the quality of care in long term care (LTC) homes range from inadequate daily care to understaffing and insufficient funding. LTC decision makers are challenged to keep up with the changing demographics of residents admitted to LTC who have increasingly complex care needs. Decisions regarding LTC policies and procedures need to be informed by research that identifies the most effective and efficient care practices. This study solicited feedback from LTC decision makers in Ontario, Canada, regarding research priorities to guide improvement in the quality of care in LTC homes. Representatives from 134 LTC homes responded (53.6% response rate). Nine thematic areas of research were identified: delivery of care; staffing; organization and structure of homes; funding; indicators, standards, policies, and procedures; managing difficult behaviors; education; safety; and infectious disease control. It is anticipated that these themes will steer research down a path that is responsive to the information needs of practitioners in LTC homes.