Using patient knowledge for better health systems

Purpose – This paper describes a “work in progress” research project being carried out with a public health care provider in the UK, a large NHS hospital Trust. Enhanced engagement with patients is one of the Trust’s core principles, but it is recognised that much more needs to be done to achieve this, and that ICT systems may be able to provide some support. The project is intended to find ways to better capture and evaluate the “voice of the patient” in order to lead to improvements in health care quality, safety and effectiveness. Design/methodology/approach – We propose to investigate the use of a patient-orientated knowledge management system (KMS) in managing knowledge about and from patients. The study is a mixed methods (quantitative and qualitative) investigation based on traditional action research, intended to answer the following three research questions: (1) How can a KMS be used as a mechanism to capture and evaluate patient experiences to provoke patient service change (2) How can the KMS assist in providing a mechanism for systematising patient engagement? (3) How can patient feedback be used to stimulate improvements in care, quality and safety? Originality/value –This methodology aims to involve patients at all phases of the study from its initial design onwards, thus leading to an understanding of the issues associated with using a KMS to manage knowledge about and for patients that is driven by the patients themselves. Practical implications – The outcomes of the project for the collaborating hospital will be firstly, a system for capturing and evaluating knowledge about and from patients, and then as a consequence, improved outcomes for both the patients and the service provider. More generally, it will produce a set of guidelines for managing patient knowledge in an NHS hospital that have been tested in one case example.

The Barriers to the Integration of the Uterine Balloon Tamponade into South Africa and Ghana's Health Systems for the Management of Postpartum Hemorrhage

Background

Postpartum hemorrhage is the most significant contributor to maternal mortality globally, claiming 140,000 lives annually. Postpartum hemorrhage is a leading cause of maternal death in South Africa, with the literature indicating that 80 percent of the postpartum hemorrhage deaths in South Africa are avoidable. Ghana, as of 2010, witnesses 2700 maternal deaths annually, primarily because of poor quality of care in health facilities and services being difficult to access. As per WHO recommendations, uterotonics are integral to treating postpartum hemorrhage as soon as it is diagnosed. In case of persistent bleeding or limited availability of uterotonics, the uterine balloon tamponade (UBT) can be used as a second line of defense. If both these measures are unable to counter the bleeding, providers must perform surgical interventions. Literature on the UBT, as one tool in the protocol to address postpartum hemorrhage, has shown it to have success rates ranging from 60 to 100 percent. Despite the potential to lower the number of postpartum hemorrhage deaths in South Africa and Ghana, the UBT has not been incorporated widely in South Africa and Ghana. The aim of this study is to describe the barriers involved with integrating the UBT into South Africa and Ghana’s health systems to address postpartum hemorrhage.

Methods

The study took place in multiple sites in South Africa (Cape Town, Johannesburg, Durban and Mpumalanga) and in Accra, Ghana. South Africa and Ghana were selected because postpartum hemorrhage contributes greatly to their maternal mortality numbers and there is potential in both countries to lower those rates through greater use of the UBT. A total of 25 participants were interviewed through purposive sampling, snowball sampling and participant referrals, and included various categories of stakeholders integral to the integration process of a medical device. Individual in-depth interviews were used for data collection, with interview questions being tailored to each stakeholder category. The focus of the interviews was on the protocol used to counter postpartum hemorrhage, the frequency with which the UBT is used as part of the protocol, and the process of integrating it into the South Africa and Ghana’s health systems. The data collected were coded using NVivo and analyzed using content analysis.

Results

The barriers to integration of the uterine balloon tamponade to address postpartum hemorrhage in South Africa and Ghana were evident on the political, economic and health delivery levels. The results indicated that the barriers to integration in South Africa included the low recognition of postpartum hemorrhage as a problem, the lack of clarity surrounding the role of the Medicines Control Council as a regulatory body for medical devices, and low awareness of the UBT as an intervention to control postpartum hemorrhage. The barriers in Ghana were the cash constraints experienced by the Ghana Health Services to fund medical devices, a heavy reliance on donors for funding, and the lack of consistent knowledge on processes involving clinical trials for new medical devices in Ghana.

Conclusion

Existing literature on methods to counter postpartum hemorrhage to reduce maternal mortality has focused on and emphasized the efficacy of the UBT. Despite overwhelming evidence supporting the use of the UBT, many health systems across the world, particularly low-income countries, do not have access to the device owing to numerous barriers in integrating the device into obstetric care. This study illustrates the need to focus on incorporating the UBT into health systems for greater availability to health workers and its use as standard of care. Ultimately, this study can be used as a stepping-stone for more research on this subject, providing evidence to influence policymakers to integrate the UBT into their protocols for postpartum hemorrhage response.

Rural health systems change

Much effort has been expended in recent years attempting to reform the Australian health system in order to deliver more efficient and effective systems of care for an ageing and increasingly chronically ill population. Rural health care systems in particular have been a focus of reform programs, and new initiatives such as University Departments of Rural Health, Regional Health Service structures and Commonwealth primary care initiatives have been designed to improve service provision and health status for rural people. However, with these attempts to reform the way rural communities understand and manage their health care, surprisingly little has changed in the day-to-day business of health care in rural and regional areas. Paradoxically, while rural communities have moved to embrace new farming technologies and environmental perspectives along with modern land management practices, revegetation and sustainable production systems, the same enthusiasm for change does not appear to have been kindled in relation to health system reforms. Rural communities, in terms of health care, are still using the equivalent of outmoded farming practices and other environmentally and economically unsustainable approaches to managing their affairs. Why might this be and what can be done to improve the current state of health reform in our rural and regional areas? The paper explores systems change in relation to health reform in rural communities and highlights several strategies for bringing about a functional synthesis of research and health service practice to create a more effective health care system in rural South Australia.

Health systems change in 2010

Whilst health science, epidemiology and public health developments have forged enormous progress in understanding, prevention and cure in the health care area we still appear to lack the motivation to tackle the fundamental antecedents of many of our emerging population-based community health problems; the prevention of chronic illness being a prime example.

In spite of much progress in the area of health science, the social, economic and evolutionary forces that cast our physical being in the world still remain poorly understood or accepted in the health care arena. However, if our health care systems are to be manageable and sustainable in the future, these wider antecedents of our health status and wellbeing must be factored more fundamentally in to our management models with more effort being put into preventing lifestyle related chronic illnesses than is currently the case.

As in the past where public health infrastructure innovations such as running water and efficient waste disposal systems served to add greatly to the wellbeing of individuals and communities, we now need to make similar efforts to control preventable illnesses such as metabolic syndrome, type 2 diabetes and lifestyle related cardio-vascular disease at their source rather than waiting until the manifestation of these conditions require major medical and chemical intervention and management before we act. Our young people are at risk of early onset chronic conditions as a result of their emerging sedentary lifestyles, un-healthy dietary habits and health related behaviours, yet we continue to concentrate our health management effort on managing those with existing chronic conditions while leaving younger generations with lifestyle practices and behaviours that pre-dispose individuals to developing chronic illness earlier and earlier in their lives.

It is time we took notice of these emerging trends and began expending more effort to prevent what are essentially lifestyle related illnesses that can be eliminated before they become endemic. By concentrating more upon the social and environmental factors affecting our illness profiles as well as upon dealing more effectively with those who are already suffering from chronic illness we will reduce the need for major end-stage interventions and alleviate the impact and cost of early onset chronic disease. To achieve this new population health vision in Australia at least, we will not only need to utilize the new government funding structures more effectively; those structures that support coordination and more effective management of care, but also take a much broader, environmental and social view of cause and effect in relation to the health of populations.

The e-health literacy framework: A conceptual framework for characterizing e-health users and their interaction with e-health systems

In current e-health research and development there is a need for a broader understanding of the capabilities and resources required for individuals to use and benefit from e-health services, i.e. their e-health literacy. The aim of
this study was to develop a new conceptualisation of e-health literacy with consideration of the experiences of a wide range of stakeholders and in alignment with current technologies. Concept mapping was used to generate a comprehensive and grounded model of e-health literacy. Concept mapping workshop participants included patients, health professionals and medical informatics experts. Eight workshops, carried out in Denmark and United Kingdom, generated 450 statements, separated into 128 clusters. Through an inductive structured analysis, seven domains were identified: 1. Ability to process information, 2. Engagement in own health, 3. Ability to engage actively with digital services, 4. Feeling safe and in control, 5. Motivation to engage with digital services, 6. Having access to systems that work, and 7. Digital services that suit individual needs. These empirically derived domains form an e-health literacy framework (eHLF) and provide new insights into the user’s ability to understand, access and use e-health technologies. The eHLF offers a framework for evaluating an individual’s or a population’s capacity to understand, use and benefit from technology to promote and maintain their health. Such a framework also provides a potential checklist for the development and improvement of e-health services.

Secure and Privacy-aware Data Collection and Processing in Mobile Health Systems

Healthcare systems have assimilated information and communication technologies in order to improve the quality of healthcare and patient's experience at reduced costs. The increasing digitalization of people's health information raises however new threats regarding information security and privacy. Accidental or deliberate data breaches of health data may lead to societal pressures, embarrassment and discrimination. Information security and privacy are paramount to achieve high quality healthcare services, and further, to not harm individuals when providing care. With that in mind, we give special attention to the category of Mobile Health (mHealth) systems. That is, the use of mobile devices (e.g., mobile phones, sensors, PDAs) to support medical and public health. Such systems, have been particularly successful in developing countries, taking advantage of the flourishing mobile market and the need to expand the coverage of primary healthcare programs. Many mHealth initiatives, however, fail to address security and privacy issues. This, coupled with the lack of specific legislation for privacy and data protection in these countries, increases the risk of harm to individuals. The overall objective of this thesis is to enhance knowledge regarding the design of security and privacy technologies for mHealth systems. In particular, we deal with mHealth Data Collection Systems (MDCSs), which consists of mobile devices for collecting and reporting health-related data, replacing paper-based approaches for health surveys and surveillance. This thesis consists of publications contributing to mHealth security and privacy in various ways: with a comprehensive literature review about mHealth in Brazil; with the design of a security framework for MDCSs (SecourHealth); with the design of a MDCS (GeoHealth); with the design of Privacy Impact Assessment template for MDCSs; and with the study of ontology-based obfuscation and anonymisation functions for health data.

Privacy and security in open and trusted health information systems

The Open and Trusted Health Information Systems (OTHIS) Research Group has formed in response to the health sector’s privacy and security requirements for contemporary Health Information Systems (HIS). Due to recent research developments in trusted computing concepts, it is now both timely and desirable to move electronic HIS towards privacy-aware and security-aware applications. We introduce the OTHIS architecture in this paper. This scheme proposes a feasible and sustainable solution to meeting real-world application security demands using commercial off-the-shelf systems and commodity hardware and software products.

Commodification of health care systems: The Catalan case

Commodification of the public healthcare system has been a growing process in recent decades, especially in universal healthcare systems and in high-income countries like Spain.  There are substantial differences in the healthcare systems of each autonomous region of Spain, among which Catalonia is characterized by having a mixed healthcare system with complex partnerships and interactions between the public and private healthcare sectors.  Using a narrative review approach, this article addresses various aspects of the Catalan healthcare system, characterizing the privatization and commodification of health processes in Catalonia from a historical perspective with particular attention to recent legislative changes and austerity measures.  The article approximates, the eventual effects that commodification and austerity measures will have on the health of the population and on the structure, accessibility, effectiveness, equity and quality of healthcare services.

Health law : scope, sources and forces

• For the purposes of this chapter, “health law” encapsulates regulation of the medical and health professions, the administration of health services and the maintenance of public health to the extent that it is connected to the provision of health services. • There are diverging views as to whether health law can be regarded as a discrete “area of law”. • Health law draws on other areas of law such as tort law, criminal law and family law. It is also draws upon other disciplines, most notably medical and health ethics. • Social and economic forces have influenced the development and direction of health law, and these forces may become even more influential as the century develops. • The increasingly globalised world has implications for Australia’s health systems and raises questions and creates commitments in respect of the international community. • Technological developments, including in respect of treatment, diagnosis and information management, create ongoing challenges for health law. • Patient rights, human rights and consumerism are increasingly key drivers in the development of health law. • Health law is significant to contemporary Australian society because of the gravity of the topics that fall within its ambit, its social relevance to so many aspects of human existence and endeavour, the important role it plays in protecting the vulnerable, and the extent to which it engages with fundamental principles of justice.

A secure architecture for Australia’s index based e-health environment

This paper proposes a security architecture for the basic cross indexing systems emerging as foundational structures in current health information systems. In these systems unique identifiers are issued to healthcare providers and consumers. In most cases, such numbering schemes are national in scope and must therefore necessarily be used via an indexing system to identify records contained in pre-existing local, regional or national health information systems. Most large scale electronic health record systems envisage that such correlation between national healthcare identifiers and pre-existing identifiers will be performed by some centrally administered cross referencing, or index system. This paper is concerned with the security architecture for such indexing servers and the manner in which they interface with pre-existing health systems (including both workstations and servers). The paper proposes two required structures to achieve the goal of a national scale, and secure exchange of electronic health information, including: (a) the employment of high trust computer systems to perform an indexing function, and (b) the development and deployment of an appropriate high trust interface module, a Healthcare Interface Processor (HIP), to be integrated into the connected workstations or servers of healthcare service providers. This proposed architecture is specifically oriented toward requirements identified in the Connectivity Architecture for Australia’s e-health scheme as outlined by NEHTA and the national e-health strategy released by the Australian Health Ministers.

The legal framework of the Australian health system

This chapter is about the role of law in the creation and operation of Australian health systems. Accordingly, this chapter discusses how law regulates the way in which health services in Australia are funded, organised, regulated, managed, operated and governed. (The question of how health professionals are regulated is discussed in Chapter 15.) Although the focus of much of health law is on legal mechanisms for the resolution of disputes or disagreements between the state, health providers, professionals, patients and families and friends, and through dispute resolutions processes setting standards for practice, these are only some of the “jobs” that health law performs. In health systems where the state undertakes a significant role in regulating, funding, managing and providing health services, health law also performs an important constitutive function. Health law declares the values upon which the health system is based, shapes social processes to achieve public ends and provides a structure for the complex interactions that occur within a modern health system. Health law regulates decision-makers in health systems by establishing who has the power to participate in decisions and in what circumstances, establishing processes through which decisions are made and creating mechanisms for decision-makers to be held publicly accountable. It is this broader constitutive function of health law that is a primary focus of much of this chapter — how and why governments use their legislative powers to structure and shape the health system.

The regulation of health professionals

This chapter is about the role of law in the management of the health workforce in Australia. Health professionals play an important role in the health system as the providers of treatment and care — without health professionals health systems would not function. The relationship between health professionals and patients has always been complex and is often subject to some form of regulation by the state. The first surviving written reference to such legal regulation dates from 1795-1750 BCE when the Babylonian Code of Hammurabi stated: “If a physician make a large incision with the operating knife, and kill him, or open a tumor with the operating knife, and cut out the eye, his hands shall be cut off.” Alexander the Great recommended the crucifixion of health professionals who killed their patients. Fortunately, the law in Australia prescribes lesser penalties for erring health professionals, but at the heart of modern regulation are similar concerns to those that underpinned the ancient Babylonian Code — to create conditions to ensure the safety of patients and the provision of quality services by health professionals.

Privacy oriented access control for electronic health records

Security and privacy in electronic health record systems have been hindering the growth of e-health systems since their emergence. The development of policies that satisfy the security and privacy requirements of different stakeholders in healthcare has proven to be difficult. But, these requirements have to be met if the systems developed are to succeed in achieving their intended goals. Access control is a fundamental security barrier for securing data in healthcare information systems. In this paper we present an access control model for electronic health records. We address patient privacy requirements, confidentiality of private information and the need for flexible access for health professionals for electronic health records. We carefully combine three existing access control models and present a novel access control model for EHRs which satisfies requirements of electronic health records.