The handling of the junior doctors’ strike reinforces a vision of the NHS where key voices are neither sought nor listened to

Despite the rise of patient and public involvement, evidence from the junior doctor’s strike suggests that little has changed in terms of the power of Westminster and the lack of public accountability for decisions that lie at the heart of how the NHS is organised. Here, Jonathan Tritter and Mio Fredriksson discuss the tensions between representative and participatory democracy in NHS decision-making, and argue that Jeremy Hunt is pursuing a centralised vision of the NHS rather than responding to consumer-driven demand

Disentangling patient and public involvement in healthcare decisions:why the difference matters

Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal-type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences

Getting involved:The extent and impact of patient and public involvement in the Swedish health system

Patient and public involvement (PPI) is framed as beneficial for individuals and for the health system. However, little is known about the extent of involvement, or of its impact. Based on data from Sweden, we show that apart from voting in regional elections (76%), more people reported involvement as individual patients (23%) than part of collective activities (5%) or activities relating to a citizen perspective (4%). There was no correlation between how many people participated and the estimated impact - which was generally low. More extensive involvement is thus not linked to the potential to influence decisions. We argue that to achieve the benefits associated with PPI it is crucial to understand more about people's motivation for being involved and what underlies low estimates of impact. This requires a more systematic approach to involvement, how it is evaluated and its results communicated to participants and the society. We also argue that a future challenge for the Swedish health system, and for other similar health systems, is to support long-term collective involvement in the midst of growing individualization of health services and involvement opportunities primarily intended for patients

Involvement that makes an impact on healthcare:Perceptions of the Swedish public

Aim: ‘Participation and influence in society’ is the first of 11 objective domains in Swedish public health policy. The aim of this article is to investigate the views of the Swedish general population on the impact of a range of health participation activities, and whether these views were associated with sociodemographic characteristics. Methods: The study utilizes a national representative survey of the Swedish population, aged 15 years and over (n = 1500). Results: Apart from voting in regional elections – which most of the respondents believed to be an influential way to make improvements in healthcare (74%) – respondents believed more in individual patient activities than activities associated with adopting a citizen role and acting collectively. A majority of respondents believed in the impact of replying to patient surveys (67%), making a complaint (61%), talking directly to staff (58%) or changing their healthcare provider (54%). Fewer believed in the impact of joining a patient organization (46%), taking part in a citizen council (35%) or joining a political party (34%). Beliefs in impact increased with educational attainment and decreased with age. Conclusions: The results suggest people have more confidence in the impact of participating as individual patients rather than collectively and as citizens. To ensure that activities enable ‘participation and influence in society’, complementary opportunities for collective involvement that also take into account under-represented voices such as those with a low level of education need to be developed

Introduction

BACKGROUND: National quality registries (NQRs) purportedly facilitate quality improvement, while neither the extent nor the mechanisms of such a relationship are fully known. The aim of this case study is to describe the experiences of local stakeholders to determine those elements that facilitate and hinder clinical quality improvement in relation to participation in a well-known and established NQR on stroke in Sweden. METHODS: A strategic sample was drawn of 8 hospitals in 4 county councils, representing a variety of settings and outcomes according to the NQR's criteria. Semi-structured telephone interviews were conducted with 25 managers, physicians in charge of the Riks-Stroke, and registered nurses registering local data at the hospitals. Interviews, including aspects of barriers and facilitators within the NQR and the local context, were analysed with content analysis. RESULTS: An NQR can provide vital aspects for facilitating evidence-based practice, for example, local data drawn from national guidelines which can be used for comparisons over time within the organisation or with other hospitals. Major effort is required to ensure that data entries are accurate and valid, and thus the trustworthiness of local data output competes with resources needed for everyday clinical stroke care and quality improvement initiatives. Local stakeholders with knowledge of and interest in both the medical area (in this case stroke) and quality improvement can apply the NQR data to effectively initiate, carry out, and evaluate quality improvement, if supported by managers and co-workers, a common stroke care process and an operational management system that embraces and engages with the NQR data. CONCLUSION: While quality registries are assumed to support adherence to evidence-based guidelines around the world, this study proposes that a NQR can facilitate improvement of care but neither the registry itself nor the reporting of data initiates quality improvement. Rather, the local and general evidence provided by the NQR must be considered relevant and must be applied in the local context. Further, the quality improvement process needs to be facilitated by stakeholders collaborating within and outside the context, who know how to initiate, perform, and evaluate quality improvement, and who have the resources to do so

Who wants to be involved in health care decisions? Comparing preferences for individual and collective involvement in England and Sweden

Background: Patient and public involvement (PPI) is framed as positive for individuals, the health system, public health, as well as for communities and society as a whole. We investigated whether preferences for PPI differed between two countries with Beveridge type health systems-Sweden and England. We measured willingness to be involved in individual treatment decisions and in decisions about the organization and provision of local health and social care services. Methods: This was a comparative cross-sectional study of the general population's preferences. Together, the two samples included 3125 respondents; 1625 in England and 1500 in Sweden. Country differences were analysed in a multinomial regression model controlling for gender, age and educational attainment. Results: Overall, 68% of respondents wanted a passive patient role and 44% wanted to be involved in local decisions about organization and provision of services. In comparison with in Sweden, they were in England less likely to want a health professional such as a GP or consultant to make decisions about their treatment and also more likely to want to make their own decisions. They were also less likely to want to be involved in local service development decisions. An increased likelihood of wanting to be involved in organizational decision-making was associated with individuals wanting to make their own treatment decisions. Women were less likely to want health professionals to make decisions and more likely to want to be involved in organizational decisions. Conclusions: An effective health system that ensures public health must integrate an effective approach to PPI both in individual treatment decisions and shaping local health and social care priorities. To be effective, involvement activities must take in to account the variation in the desire for involvement and the implications that this has for equity. More work is needed to understand the relationship between the desire to be involved and actually being involved, but both appear related to judgements of the impact of involvement on health care decisions

Patient and public involvement in the build-up of COVID-19 testing in Sweden

Background Patient and public involvement in healthcare can be particularly challenging during crises such as the COVID-19 pandemic. Objective The aims of the study, which focuses on COVID-19 testing in Sweden, were to explore (1) how, or to what extent, patients and members of the public were involved in decisions about the organization of COVID-19 testing during the first year of pandemic and (2) whether this was seen as feasible or desirable by regional and national stakeholders. Methods A qualitative interview study was conducted with key organizational stakeholders at three national agencies and within three Swedish regions (n = 16). Results There had been no patient and public involvement activities in the area of COVID-19 testing. The regions had, however, tried to respond to demands or critiques from patients and the public along the way and to adapt the services to respond to their preferences. The need for rapid decision-making, the uncertainty about whom to involve, as well as a hesitation about the appropriateness of involving patients and the public contributed to the lack of involvement. Conclusion Future studies on patient and public involvement during crises should address what structures need to be in place to carry out involvement successfully during crises and when to use activities with varying degrees of power or decision-making authority for patients and members of the public. Patient or Public Contribution Fifteen members of the public contributed with short reflections on the study findings

Between Equity and Local Autonomy : A Governance Dilemma in Swedish Healthcare

Both national equity in healthcare and the county councils’ local autonomy are important values supported by Swedish law. Politically it is a balancing act; how much freedom should the county councils have and to what extent should healthcare be equal throughout the country? The general aim of this dissertation, concerning political governance in Swedish healthcare, is to investigate the tensional values of national equity and local autonomy in the light of current trends in healthcare governance in Sweden. How is this tension manifested? Four studies are included in the dissertation. These studies show that the Swedish state is becoming more active in governing and regulating healthcare, for example by the use of informative governance and legislation, which increasingly rely on monitoring and evaluation of results that are made public. The findings show that the tension between national equity and local autonomy is manifested in increasing emphasis on national equity – or rather national equivalence – which is interpreted in terms of Swedish healthcare being recentralized. Delivery and financing of healthcare are still the responsibilities of the county councils. Planning and arranging – the setting of the regulatory framework – is increasingly taken over by the central state. Although power seems to be transferred from local level to central level, the county councils’ autonomy is only partially restricted, which means Swedish healthcare is still decentralized. However, if the recentralization process proceeds further, the county councils´ autonomy may be seriously challenged. Another challenge is to maintain or strengthen the procedures for democratic legitimacy through citizen participation at the local level. When local autonomy looses ground, it becomes more difficult to tailor healthcare according to local needs and conditions in the county councils, and decisions are taken at greater distance from the citizens

Between Equity and Local Autonomy : A Governance Dilemma in Swedish Healthcare

Both national equity in healthcare and the county councils’ local autonomy are important values supported by Swedish law. Politically it is a balancing act; how much freedom should the county councils have and to what extent should healthcare be equal throughout the country? The general aim of this dissertation, concerning political governance in Swedish healthcare, is to investigate the tensional values of national equity and local autonomy in the light of current trends in healthcare governance in Sweden. How is this tension manifested? Four studies are included in the dissertation. These studies show that the Swedish state is becoming more active in governing and regulating healthcare, for example by the use of informative governance and legislation, which increasingly rely on monitoring and evaluation of results that are made public. The findings show that the tension between national equity and local autonomy is manifested in increasing emphasis on national equity – or rather national equivalence – which is interpreted in terms of Swedish healthcare being recentralized. Delivery and financing of healthcare are still the responsibilities of the county councils. Planning and arranging – the setting of the regulatory framework – is increasingly taken over by the central state. Although power seems to be transferred from local level to central level, the county councils’ autonomy is only partially restricted, which means Swedish healthcare is still decentralized. However, if the recentralization process proceeds further, the county councils´ autonomy may be seriously challenged. Another challenge is to maintain or strengthen the procedures for democratic legitimacy through citizen participation at the local level. When local autonomy looses ground, it becomes more difficult to tailor healthcare according to local needs and conditions in the county councils, and decisions are taken at greater distance from the citizens