Chronicling the patient journey: Co-creating value with digital health ecosystems

With the introduction of the PCEHR (Personally Controlled Electronic Health Record), the Australian public is being asked to accept greater responsibility for the management of their health information. However, the implementation of the PCEHR has occasioned poor adoption rates underscored by criticism from stakeholders with concerns about transparency, accountability, privacy, confidentiality, governance, and limited capabilities. This study adopts an ethnographic lens to observe how information is created and used during the patient journey and the social factors impacting on the adoption of the PCEHR at the micro-level in order to develop a conceptual model that will encourage the sharing of patient information within the cycle of care. Objective: This study aims to firstly, establish a basic understanding of healthcare professional attitudes toward a national platform for sharing patient summary information in the form of a PCEHR. Secondly, the studies aims to map the flow of patient related information as it traverses a patient’s personal cycle of care. Thus, an ethnographic approach was used to bring a “real world” lens to information flow in a series of case studies in the Australian healthcare system to discover themes and issues that are important from the patient’s perspective. Design: Qualitative study utilising ethnographic case studies. Setting: Case studies were conducted at primary and allied healthcare professionals located in Brisbane Queensland between October 2013 and July 2014. Results: In the first dimension, it was identified that healthcare professionals’ concerns about trust and medico-legal issues related to patient control and information quality, and the lack of clinical value available with the PCEHR emerged as significant barriers to use. The second dimension of the study which attempted to map patient information flow identified information quality issues, clinical workflow inefficiencies and interoperability misconceptions resulting in duplication of effort, unnecessary manual processes, data quality and integrity issues and an over reliance on the understanding and communication skills of the patient. Conclusion: Opportunities for process efficiencies, improved data quality and increased patient safety emerge with the adoption of an appropriate information sharing platform. More importantly, large scale eHealth initiatives must be aligned with the value proposition of individual stakeholders in order to achieve widespread adoption. Leveraging an Australian national eHealth infrastructure and the PCEHR we offer a practical example of a service driven digital ecosystem suitable for co-creating value in healthcare.

“It puts a human face on the researched”: A qualitative evaluation of an Indigenous research governance model

Objective This study aimed to describe the Inala Aboriginal and Torres Strait Islander Community Jury for Health Research, and evaluate its usefulness as a model of Indigenous research governance within an urban Indigenous primary health care service from the perspectives of Jury members and researchers. Methods Informed by a phenomenological approach and using narrative inquiry, a focus group was conducted with Jury members and key informant interviews were undertaken with researchers who had presented to the Community Jury in its first year of operation. Results The Jury was a site of identity work for researchers and Jury members, providing an opportunity to observe and affirm community cultural protocols. Although researchers and Jury members had differing levels of research literacy, the Jury processes enabled respectful communication and relationships to form which positively influenced research practice, community aspirations and clinical care. Discussion The Jury processes facilitated transformative research practice among researchers, and resulted in transference of power from researchers to the Jury members to the mutual benefit of both. Conclusion Ethical Indigenous health research practice requires an engagement with Indigenous peoples and knowledges at the research governance level, not simply as subjects or objects of research.

Analysis of governance for sustainability planning in the Cairns Region

The relationship between governance arrangements and sustainability planning outcomes in complex governance systems remains poorly understood, despite significant discussions of governance in the environmental management literature emerging in the last decade. In order to analyse and examine the relationship between the health of sustainability planning governance and decision-making outcomes, this paper applies the Governance Systems Analysis framework (GSA) in the Cairns region. This paper analyses the sustainability planning governance arrangements in the Cairns region by exploring the capacity, connectivity and knowledge use of institutions in the region to deliver desired sustainability planning outcomes. The paper finds that the planning for sustainability in the Cairns region is on a knife’s edge, and could fail or succeed to deliver its intended decision-making outcomes. The paper concludes with recommendations for governance reform for sustainability in the Cairns region.

Do health inquiries lead to health system change? What have we learnt from recent health inquiries and will the same mistakes happen again?

Since 2001 there have been numerous Commissions of Inquiry into health system failures across the world. While the Inquiries were established to examine poor patient outcomes, each has identified a range of leadership and management shortcomings that have contributed to a poor standard of patient care. While there is an acknowledgement that different heath systems have different contexts, this paper highlights a number of themes that are common across Inquiries. It will discuss a number of common system failures in Inquiries spanning from 2001 to 2013 and pose questions as to why these types of failures are likely to re-occur, as well as possible learnings for health service management and leadership to address a number of these common themes.

Health complaints and regulatory reform: Implications for vulnerable populations?

Complaints and disciplinary processes play a significant role in health professional regulation. Many countries are transitioning from models of self-regulation to greater external oversight through systems including meta regulation, responsive (risk–based) regulation, and “networked governance”. Such systems harness, in differing ways, public, private, professional and non-governmental bodies to exert influence over the conduct of health professionals and services. Interesting literature is emerging regarding complainants’ motivations and experiences, the impact of complaints processes on health professionals and identification of features such as complainant and health professional profiles, types of complaints and outcomes. This paper concentrates on studies identifying vulnerable groups and their participation in health care regulatory systems.

Coral health and disease in the Pacific: vision for action

Shallow coral reefs in the IndoPacific contain the highest diversity of marine organisms in the world, with approximately 1500 described species of fish, over 500 species of scleractinian corals, and an estimated 1-10 million organisms yet to be characterized (Reaka-Kudla et al. 1994). These centers of marine biodiversity are facing significant, multiple threats to reef community and habitat structure and function, resulting in local to wide-scale regional damage. Wilkinson (2004) characterized the major pressures as including (1) global climate change, (2) diseases, plagues and invasive species, (3) direct human pressures, (4) poor governance and lack of political will, and (5) international action or inaction. Signs that the natural plasticity of reef ecosystems has been exceeded in many areas from the effects of environmental (e.g., global climate change) and anthropogenic (e.g., land use, pollution) stressors is evidenced by the loss of 20% of the world’s coral reefs (Wilkinson 2004). Predictions are that another 24% (Wilkinson 2006) are under imminent risk of collapse and an additional 26% are under a longer term threat from reduced fitness, disease outbreaks, and increased mortality. These predictions indicate that the current list of approximately 30-40 fatal diseases impacting corals will expand as will the frequency and extent of “coral bleaching” (Waddell 2005; Wilkinson 2004). Disease and corallivore outbreaks, in combination with multiple, concomitant human disturbances are compromising corals and coral reef communities to the point where their ability to rebound from natural disturbances is being lost.

Strengthening community roles in aquatic resource governance in Uganda

Lake Victoria fisheries face severe environmental stresses. Stocks are declining in a context of increasing population and growing demand for the lake’s resources. Rising competition between users is putting conservation goals and rural livelihoods at risk. While Uganda’s co-management policy framework is well-developed, key resources for implementation are lacking, enforcement is poor, and the relations between stakeholders are unequal. Poor rural resource users face significant challenges to effectively participate in fisheries decision-making. This case study demonstrates the progress that can be made using a collaborative approach to catalyze community-led actions linking public health, sanitation and environmental conservation in difficult circumstances, even over a relatively short time period. Multistakeholder dialogue can bring to light the sources of conflict, pinpoint governance challenges, and identify opportunities for institutional collaboration to address community needs. At the same time, the process can help build trust, confidence in collective action and public accountability.

Developing a toolkit for assessing the impact of health library services on patient care

Urquhart,C., Spink, S., Thomas, R. & Weightman, A. (2007). Developing a toolkit for assessing the impact of health library services on patient care. Report to LKDN (Libraries and Knowledge Development Network). Aberystwyth: Department of Information Studies, Aberystwyth University. Sponsorship: Libraries and Knowledge Development Network/ NHS

Pretty good governance: balancing policy drivers and stakeholder interests in developing fisheries ecosystem plans

The central research question that this thesis addresses is whether there is a significant gap between fishery stakeholder values and the principles and policy goals implicit in an Ecosystem Approach to Fisheries Management (EAFM). The implications of such a gap for fisheries governance are explored. Furthermore an assessment is made of what may be practically achievable in the implementation of an EAFM in fisheries in general and in a case study fishery in particular. The research was mainly focused on a particular case study, the Celtic Sea Herring fishery and its management committee, the Celtic Sea Herring Management Advisory Committee (CSHMAC). The Celtic Sea Herring fishery exhibits many aspects of an EAFM and the fish stock has successfully recovered to healthy levels in the past 5 years. However there are increasing levels of governance related conflict within the fishery which threaten the future sustainability of the stock. Previous research on EAFM governance has tended to focus either on higher levels of EAFM governance or on individual behaviour but very little research has attempted to link the two spheres or explore the relationship between them. Two main themes within this study aimed to address this gap. The first was what role governance could play in facilitating EAFM implementation. The second theme concerned the degree of convergence between high-level EAFM goals and stakeholder values. The first method applied was governance benchmarking to analyse systemic risks to EAFM implementation. This found that there are no real EU or national level policies which provide stakeholders or managers with clear targets for EAFM implementation. The second method applied was the use of cognitive mapping to explore stakeholders understandings of the main ecological, economic and institutional driving forces in the Celtic Sea Herring fishery. The main finding from this was that a long-term outlook can and has been incentivised through a combination of policy drivers and participatory management. However the fundamental principle of EAFM, accounting for ecosystem linkages rather than target stocks was not reflected in stakeholders cognitive maps. This was confirmed in a prioritisation of stakeholders management priorities using Analytic Hierarchy Process which found that the overriding concern is for protection of target stock status but that wider ecosystem health was not a priority for most management participants. The conclusion reached is that moving to sustainable fisheries may be a more complex process than envisioned in much of the literature and may consist of two phases. The first phase is a transition to a long-term but still target stock focused approach. This achievable transition is mainly a strategic change, which can be incentivised by policies and supported by stakeholders. In the Celtic Sea Herring fishery, and an increasing number of global and European fisheries, such transitions have contributed to successful stock recoveries. The second phase however, implementation of an ecosystem approach, may present a greater challenge in terms of governability, as this research highlights some fundamental conflicts between stakeholder perceptions and values and those inherent in an EAFM. This phase may involve the setting aside of fish for non-valued ecosystem elements and will require either a pronounced mind-set and value change or some strong top-down policy incentives in order to succeed. Fisheries governance frameworks will need to carefully explore the most effective balance between such endogenous and exogenous solutions. This finding of low prioritisation of wider ecosystem elements has implications for rights based management within an ecosystem approach, regardless of whether those rights are individual or collective.

The Open Method of Coordination on Health Care After the Lisbon Strategy II: Towards a Neoliberal Framing?

This paper undertakes a content analysis of the discourse on the Open Method of Coordination on Health Care (OMC/HC) in order to show how equity and solidarity are increasingly linked to optimisation and, as such, how neoliberalism increasingly frames health care. Some of the side-effects of this reframing for politics are highlighted: legitimating and extending EU governance, reducing the space for oppositional formations and limited citizenship. The analysis begins by interrogating the broader context of the Lisbon Strategy II, after which the techniques of the OMC/HC and its substantive outputs are analysed.

The challenges of joint working: lessons from the Supporting People Health Pilot evaluation

Purpose: This paper reports the findings of the evaluation of the Supporting People Health Pilots programme, which was established to demonstrate the policy links between housing support services and health and social care services by encouraging the development of integrated services. The paper highlights the challenges Method: The evaluation of the six health pilots rested on two main sources of data collection: Quarterly Project Evaluation Reports collected process data as well as reporting progress against aims and objectives. Semi-structured interviews—conducted across all key professional stakeholder groups and agencies and with people who used services—explored their experiences of these new services. Results: The ability of pilots to work across organisational boundaries to achieve their aims and objectives was associated not only with agencies sharing an understanding of the purpose of the joint venture, a history of joint working and clear and efficient governance arrangements but on two other characteristics: the extent and nature of statutory sector participation and, whether or not the service is defined by a history of voluntary sector involvement. In particular the pilots demonstrated how voluntary sector agencies appeared to be less constrained by organisational priorities and professional agenda and more able to respond flexibly to meet the complex needs of individuals. Conclusion and discussion: The pilots demonstrate that integrating services to support people with complex needs works best

Regulatory or Regulating Publics? The European Union’s Regulation of Emerging Health Technologies and Citizen Participation

‘Citizen participation’ includes various participatory techniques and is frequently viewed as an unproblematic and important social good when used as part of the regulation of the innovation and implementation of science and technology. This is perhaps especially evident in debates around ‘anticipatory governance’ or ‘upstream engagement’. Here, we interrogate this thesis using the example of the European Union’s regulation of emerging health technologies (such as nanotechnology). In this case, citizen participation in regulatory debate is concerned with innovative objects for medical application that are considered to be emergent or not yet concrete. Through synthesising insights from law, regulatory studies, critical theory, and science and technology studies (STS), we seek to cast new light on the promises, paradoxes and pitfalls of citizen participation as a tool or technology of regulation in itself. As such we aim to generate a new vantage point from which to view the values and sociotechnical imaginaries that are both ‘designed-in’ and ‘designed-out’ of citizen participation. In so doing, we show not only how publics (do not) regulate technologies, but also how citizens themselves are regulated through the techniques of participation. © The Author [2012].

‘Papers from ‘A Symposium with Professor Roger Brownsword: Super-stewardship in the Context of Public Health’’

This special issue seeks to engage the term 'stewardship' and the practical and theoretical work around it, both of which are destined to remain items of unfinished business as governance struggles to keep up and connect with its fast moving technological and societal targets. While this special issue is testament to that observation, it also helps to foster much needed scholarly discussion and critique – and to ensure this field is not unwittingly formed and deployed by and as a legitimating support for governance, but rather opened up, elaborated and contested. The articles provide innovative insights and food for thought on the conception and legal-political practice and potential of stewardship and ‘super-stewardship’ in national, supranational and international settings.

Capitalism, the state and health care in the age of austerity:A Marxist analysis

The capacity to provide satisfactory nursing care is being increasingly compromised by current trajectories of healthcare funding and governance. The purpose of this paper is to examine how well Marxist theories of the state and its relationship with capital can explain these trajectories in this period of ever-increasing austerity. Following a brief history of the current crisis, it examines empirically the effects of the crisis, and of the current trajectory of capitalism in general, upon the funding and organization of the UK and US healthcare systems. The deleterious effect of growing income inequalities to the health of the population are also addressed. Marx’s writings on the state and its relation to the capitalist class were fragmentary, and historically and geographically specific. From them, we can extract three theoretical variants: the instrumentalist theory of the state, where the state has no autonomy from capital; the abdication theory, whereby capital abstains from direct political power and relies on the state to serve its interests; and the class-balance theory of the state, whereby the struggle between two opposed classes allows the state to assert itself. Discussion of modern Marxist interpretations include Poulantzas’s structuralist abdication theory and Miliband’s instrumentalist theory. It is concluded that, despite the pluralism of electoral democracies, the bourgeoisie do have an overweening influence upon the state. The bourgeoisie’s ownership of the means of production provides the foundation for its influence because the state is obliged to rely on it to manage the supply of goods and services and the creation of wealth. That power is further reinforced by the infiltration of the bourgeoisie into the organs of state. The level of influence has accelerated rapidly over recent decades. One of the consequences of this has been that healthcare systems have become rich pickings for the evermore confident bourgeoisie.

Self-reported teamwork in family health team practices in Ontario:Organizational and cultural predictors of team climate

Objective: To determine the organizational predictors of higher scores on team climate measures as an indicator of the functioning of a family health team (FHT). Design: Cross-sectional study using a mailed survey. Setting: Family health teams in Ontario. Participants: Twenty-one of 144 consecutively approached FHTs; 628 team members were surveyed. Main outcome measures: Scores on the team climate inventory, which assessed organizational culture type (group, developmental, rational, or hierarchical); leadership perceptions; and organizational factors, such as use of electronic medical records (EMRs), team composition, governance of the FHT, location, meetings, and time since FHT initiation. All analyses were adjusted for clustering of respondents within the FHT using a mixed random-intercepts model. Results: The response rate was 65.8% (413 of 628); 2 were excluded from analysis, for a total of 411 participants. At the time of survey completion, there was a median of 4 physicians, 11 other health professionals, and 4 management and clerical staff per FHT. The average team climate score was 3.8 out of a possible 5. In multivariable regression analysis, leadership score, group and developmental culture types, and use of more EMR capabilities were associated with higher team climate scores. Other organizational factors, such as number of sites and size of group, were not associated with the team climate score. Conclusion: Culture, leadership, and EMR functionality, rather than organizational composition of the teams (eg, number of professionals on staff, practice size), were the most important factors in predicting climate in primary care teams.