Journal articles on the topic 'Design for the elderly, Inclusive design, Healthcare service system'

Objective: Older people with chronic diseases often have complex and interacting needs and require treatment and care from a wide range of professionals and services concurrently. This structured review will identify the components of the chronic care model (CCM) required to support healthcare that transitions seamlessly between hospital and ambulatory settings for people over 65 years of age who have two or more chronic diseases. Method: A structured review was conducted by searching six electronic databases combining the terms ‘hospital’, ‘ambulatory’, ‘elderly’, ‘chronic disease’ and ‘integration/seamless’. Four articles meeting the inclusion criteria were included in the review. Study setting, objectives, design, population, intervention, CCM components, outcomes and results were extracted and a process of descriptive synthesis applied. Results and conclusion: All four studies reported only using a few components of the CCM – such as clinical information sharing, community linkages and supported self-management – to create an integrated health system. The implementation of these components in a health service seemed to improve the seamless transition between hospital and ambulatory settings, health outcomes and patient experiences. Further research is required to explore the effect of implementing all CCM components to support transition of care between hospital and ambulatory services.

This paper explores and analyses the interactive home geriatric two-way video health care system, investigates and analyses the daily lives and behaviours of the elderly in their homes through research interviews, obtains the main needs of the elderly population in their lives, as well as their cognitive and behavioural characteristics, and proposes four service function modules for the elderly in their homes; then, combining service design and interaction design theory, we propose the following four service modules for the elderly in their homes. Given the design methods and processes of the intelligent service system for the elderly at home as well as the interface interaction design principles on the three levels of vision, interaction, and reflection, the intelligent service system platform for the elderly at home was constructed, the interaction design of the mobile device terminal software of the service system platform practiced in the form of APP, and the eye-movement experiment method and fuzzy hierarchical analysis were applied to the design of the intelligent service system for the elderly at home from qualitative and quantitative perspectives. The thesis study provides a new way of thinking to design and provide intelligent service system products for the elderly living at home, which is an important contribution to society’s care for the elderly and their quality of life. The key features of the human skeleton are extracted from the model of abnormal leaning and falling behaviour of the elderly, and the SVM machine learning method is used to classify and identify the data, which enables the identification of the abnormal behaviour of the elderly at home with an accuracy of 97%.

Population ageing becomes a perplexing conundrum with social and economic development. Many senior citizens are now empty nesters because the younger generation prefer to stay in metropolises for a better life. Therefore, living in a nursing home is a popular choice for the aged. This objective-oriented paper proposes a sustainable elderly healthcare system for nursing homes. The main work is the design and implementation of a new rapid and interactive assistance service. Based on cost-effective fingerprint indoor-positioning technology, the alert message that a person is at risk will be immediately sent to nearby people before professionals arrive. Warning messages are available when nearing marked areas (e.g., slippery floors). The parallel path-finding algorithm plays a significant role in finding nearby people and alerting people who approach specific areas. Furthermore, this system provides application programming interfaces to connect to health devices, such as smart bracelets, watches, and glasses. In general, the system is designed to ensure the safety of the elderly and improve management efficiency, which corresponds to present smart elderly care proposals from governments.

Purpose In view of the elderly caregiving service being in high demand nowadays, the purpose of this paper is to develop an intelligent e-healthcare system for the domestic care industry by using the Internet of Things (IoTs) and Fuzzy Association Rule Mining (FARM) approach. Design/methodology/approach The IoTs connected with the e-healthcare system collect real-time vital sign monitoring data for the e-healthcare system. The FARM approach helps to identify the hidden relationships between the data records in the e-healthcare system to support the elderly care management tasks. Findings To evaluate the proposed system and approach, a case study was carried out to identify the association between the specific collected demographic data, behavior data and the health measurements data in the e-healthcare system. It is found that the discovered rules are useful for the care management tasks in the elderly healthcare service. Originality/value Knowledge discovery in databases uses various data mining techniques and rule-based artificial intelligence algorithms. This paper demonstrates complete processes on how an e-healthcare system connected with IoTs can support the elderly care services via a data collection phase, data analysis phase and data reporting phase by using the FARM to evaluate the fuzzy sets of the data attributes. The caregivers can use the discovered rules for proactive decision support of healthcare services and to improve the overall service quality by enhancing the elderly healthcare service responsiveness.

The ageing society has resulted in imbalances in the population age ratio. The ratio of working-age people was less than that of elderly people resulting in a shortage of elderly caregivers and increased healthcare costs. Although the lifestyle the elderly remains the same, their physical abilities are reduced, requiring them to rely on special equipment when traveling in order to gain more control and safety. Therefore, the Elderly Personal Mobility Device (EPMD) is developed using Internet of Things (IoT) technology to reduce the burden of caregivers, provide freedom and safety for elderly travelers, assess air pollution risks, and alert the occurrence of emergency events. The EPMD is designed in terms of structure, electrical equipment, and sensor systems. First, the shapes, sizes, and thicknesses of the carbon steel used for construction of the EPMD structure are calculated by using SolidWorks software. Next, the electric equipment is carefully selected to meet the requirements of actual use. Finally, the sensor system is designed to monitor the EPMD status and air quality using IoT devices to create a data interface and big data for elderly health service development, as well as an air quality map with distributed measuring stations and a charging station detection system for future use.

AbstractDigital technology is dramatically changing our life, industry, and society. Recent evolution of digital technology is expected to significantly impact service work, such as healthcare and social welfare. Meanwhile, an insufficient understanding of service work and workers' needs leads to the failure of technology development and integration. To make digital technology better fit to values and work practices of service workers, various studies have been conducted, especially in the field of participatory design, interaction design, and service design. However, the contribution of engineering design to this topic is still limited. This paper proposes an engineering design approach to design digital technology for better integration in service work. This study combines a modelling method to represent specifications of digital technology and the participatory approach in alignment with the changing service work and workers' values. A case study of the mobile application system for elderly-care professionals is introduced to exemplify the effectiveness of the proposed method. This study intends to foster innovation of service work through digitalization.

Digital elderly care service is an innovative elderly care model, and its emergence has brought about a huge change in the field of elderly care services (ECSS). The current method is to make the elderly care service more precise and personalized, improve the ability and level, and improve the current ECSS. The defect is that the short of top-level design and overall planning is basically only in the state of trial operation. In order to solve these problems, this paper proposes to study how to intervene in social work in smart ECSS to enhance service capabilities and improve service quality on the original basis. Therefore, based on the use of human-computer interaction technology, this paper deepens the research on the current elderly care services. According to a survey of the elderly in a certain city, the digital elderly care system shows that 25.33% of the elderly prefer to use housekeeping services, and 63% of the elderly prefer healthcare services. The results show that the digital elderly care service system based on human-computer interaction technology is easier to be accepted by the elderly than the traditional elderly care service. The elderly care service system under human-computer interaction is more considerate than the traditional elderly care service system and can make the elderly’s life more colorful.

Healthcare robots assist older people and caregivers. Many scientists and researchers have been looking at the use of robotic technology to help not only elderly people but also their care providers. Through a review of the literature and an in-depth study of published papers, we include a timely overview of care robotics. In this study, we review what we know about the use of assistive robots in the elderly care context, their benefits and potential challenges. These humanoid resources offer a range of physical, cognitive, and social tasks in the aim of improving health outcomes. Service Science calls for understanding complex service systems, our Sociotechnical system (STS) lens applied to the use of robotics in the nursing function aims at learning the underlying trajectories of socio-technical dynamics within the nursing service system and the complexity introduced by their humanoid counterpart. This presents a significant contribution to Service Science. In essence, the research introduces the STS lens to understand the interaction between human and machine in the nursing ecosystem, while proposing learnings on a better design in practice. We focus on the current and potential future challenges of healthcare robotics as well as how such technology can help healthy aging, healthcare staff, especially nurses, and our healthcare system as a whole. We conclude that, despite the potential advantages, the adoption of care robots is still shy. Using the lens of the sociotechnical perspective and concepts of service innovation roadmaps, we pave the way for identifying factors of adoption that may influence the proliferation of care robots.

In this paper, the strategy of elderly haemodialysis patients’ care is analysed by the computer’s decision system to conduct an in-depth research machine. Maintenance haemodialysis patients have a high demand for continuation care, and healthcare workers should provide personalized and specialized seamless continuation care services for patients according to patients’ needs, by reasonably using the hospital, community, and other health resources and with the help of emerging network technologies, such as information platforms and wearable devices to prolong the survival period of patients and improve their self-management ability and quality of life. The service provision and compensation strategy of the combined healthcare model should be optimized to improve the health protection of the elderly and promote health equity. On the one hand, it should target strengthening the service provision of healthcare integration, guide the elderly to reasonably choose the healthcare integration model, and pay attention to the spiritual and cultural needs and end-of-life care services for the elderly. On the other hand, we should expand the financing channels of medical insurance, optimize the design of compensation mechanisms, explore the role of health risk sharing, and accelerate the development of long-term care insurance, independent of basic medical insurance. The reliability of the scale was found to be 0.916 for the total Cronbach alpha coefficient, 0.798–0.919 for each dimension, and 0.813 for the fold-half reliability of the scale; the validity indicated that the correlation coefficient range of each article day with the total scale score was 0.27–0.72, and the correlation coefficient range of each dimension with the total scale was 0.56–0.72. The validation factor analysis was used to verify the structure of the scale. The validation factor analysis indexes met the fitting criteria after correction. The model fitted better with the actual model after correction, indicating that the scale has good reliability.

Purpose The purpose of this paper is to develop an Internet of medical things (IoMT)-based geriatric care management system (I-GCMS), integrating IoMT and case-based reasoning (CBR) in order to deal with the global concerns of the increasing demand for elderly care service in nursing homes. Design/methodology/approach The I-GCMS is developed under the IoMT environment to collect real-time biometric data for total health monitoring. When the health of an elderly deteriorates, the CBR is used to revise and generate the customized care plan, and hence support and improve the geriatric care management (GCM) service in nursing homes. Findings A case study is conducted in a nursing home in Taiwan to evaluate the performance of the I-GCMS. Under the IoMT environment, the time saving in executing total health monitoring helps improve the daily operation effectiveness and efficiency. In addition, the proposed system helps leverage a proactive approach in modifying the content of a care plan in response to the change of health status of elderly. Originality/value Considering the needs for demanding and accurate healthcare services, this is the first time that IoMT and CBR technologies have been integrated in the field of GCM. This paper illustrates how to seamlessly connect various sensors to capture real-time biometric data to the I-GCMS platform for responsively supporting decision making in the care plan modification processes. With the aid of I-GCMS, the efficiency in executing the daily routine processes and the quality of healthcare services can be improved.

This paper studies the issue of demand information asymmetry in an elderly healthcare service (EHS) system represented by a two-echelon elderly healthcare service supply chain (EHSSC) comprising an elderly service integrator (ESI) and a service provider (ESP). The goal of the ESI is to decide on how much service capacity is required for placing orders to the ESP, who directly serves the customers. Considering discrete and continuous demand distribution statuses, a centralised model with symmetric demand information and decentralised models with asymmetric demand information are developed to analyse the optimal ordering decisions and discuss the influence of information asymmetry. Furthermore, option contracts are applied to help coordinate the supply chain under asymmetric demand information based on different demand distribution statuses. Optimal option contract menus are designed for the ESP to promote the information sharing. Results show that the option contract can coordinate the EHSSC with asymmetric demand information under both discrete and continuous demand distribution statuses. The exercise price will be higher under lower demand information than that under higher demand information and the transfer payment will be less under lower demand information than that under higher demand information. Moreover, although the ESI has demand information superiority and can make use of opportunistic behaviour to maximise its own profit, the ESP as the leader can design the option contract to incentive the ESI to achieve true information sharing, and even obtain nearly all of the channel profit.

Heart failure is the most common disease among elderly people, and the risk increases with age. The use of smart Internet of Things (IoT) systems for monitoring patients with chronic heart failure (CHF) in a non-intrusive manner can result in better control of the disease, improving proactive healthcare through real-time and historical patient’s data, promoting self-care in patients, reducing unneeded interaction between patients and doctors, reducing the number of hospitalizations and saving healthcare costs. This work presents an active assisted living (AAL) solution based on the IoT to provide a tele-assistance platform for CHF patients from the public health service of the region of Murcia in Spain, with formal and informal caregivers and health professionals also as key actors. In this article, we have detailed the methodology, results, and conclusions of the prevalidation phase for the set of IoT technologies to be integrated in the AAL platform, the first mandatory step before the deployment of a large-scale pilot that will lead to improving the innovation of the system from its current technology readiness level to the market. The work presented, in the framework of the H2020 Pharaon project, aims to serve as inspiration to the R&D community for the design, development, and deployment of AAL solutions based on heterogeneous IoT technologies, or similar approaches, for smart healthcare solutions in real healthcare institutions.

Purpose This paper aims to examine the trends among the elderly population in China about residential preferences and policy applications, as the elderly is a rapidly expanding demographic group that has increasing and diversifying inclinations for demanding the residential facilities for the elderly (RFEs) now and in the foreseeable future. Design/methodology/approach Based on a review of the existing literature and policies, a model is conceptualised for understanding the demands of the elderly. Their needs for functional supportiveness and richness of residential resources in RFEs are then categorised into focal groups. Findings The Chinese elderly’s demand for specialised residential facilities is under a shift from seeking deficit relief to pursuing personal choices. It is suggested that there will be a continuing demand for affordable RFEs from a number of key focal groups, including: the functionally impaired; marginally housed; socially isolated; and the elderly requiring social relief. In addition, retirement housing in China is likely to be more affordable for the next elderly generation. However, the immature social welfare system and low average income level of the current elderly generation means that the Chinese Government has tough decisions to make about service priorities. Practical implications Policy and investment priorities may have to be inclusive of those who demand social relief (free-of-charge) and affordable professional long-term care in RFEs, whereas the rest of the demand could be released by growth in the development of community- and home-based service systems. Originality/value This study is one of the first to identify the diversifying demands of age-exclusive living facilities for the elderly that deserve priorities in China. The results can inform and guide future policy and project investment in China.

Moving from the experience gained in home telemonitoring of elderly patients with Congestive Heart Failure, that confirmed a reduction of the rehospitalization rate and an improved monitoring of drugs assumption by the patients, this paper extends the evaluation of technological approaches for remote health monitoring of older adults. Focus of the evaluation is on telemedicine effectiveness and usability, either from a patient’s or a medical operator’s perspective. The evaluation has been performed by testing three remote health platforms designed according to different technological approaches, in a realistic scenario involving older adults and medical operators (doctors and nurses). The aim of the testing activity was not to benchmark a specific solution with respect to the others, but to evaluate the main positive and negative issues related to the system and service design philosophy each solution was built upon. Though preliminary, the results discussed in the paper can be used as a set of guidelines in the selection of proper technological equipments for services targeted to elderly users, from a usability perspective. These results need to be complemented with more focused discussions of the ethical, medical, and legal aspects of the use of technology in remote healthcare.

Purpose The purpose of this paper is to investigate the role of intellectual capital (IC) in promoting the sustainable development (SD) program of the Emilia-Romagna Health Service. The contributions of the following assets were investigated: leadership and competences, culture, performance measurement and incentives systems, social capital and technologies. Design/methodology/approach The case study was conducted following a hierarchical approach: perceptions of the regional directorate of public and social health, the general directors and healthcare professionals of the regional health system (the setting) were analyzed through interviews, focus groups and documentation in order to investigate: the emerging definition of SD within the setting; the role of IC, if any, in the achievement of the regional SD goals. Findings SD culture did not expand at the operative level because of the lack of involvement of healthcare professionals in a permanent dialogue for sustainability. Sustainability projects were not systematic which restricted the development of staff awareness of sustainability issues. Social capital enabled environmental projects and medical projects that increased patients’ involvement in disease management. Technology could help the shift toward sustainability, but it requires consideration of tangible and intangible costs for its successful adoption. SD performance measurement and incentives were in their infancy and cost accounting continues to dominate the healthcare sustainability debate. Research limitations/implications Despite the low number of healthcare professionals involved in the focus groups, the paper represents one of the first attempts to frame their perceptions on SD implementation in healthcare. Practical implications Regional institutions should consider new ways of enacting SD which should be more inclusive of healthcare professionals. The establishment of a permanent interdisciplinary dialogue on sustainability would develop human, social and structural capital for sustainability. Healthcare organizations should monitor the environmental and social effects of their operations to enact their primary mission: the promotion of health. Originality/value The paper contributes to theory development related to the role of IC for SD in the public sector context and, in particular, in the healthcare sector where evidence is currently limited.

Purpose Severe mental illness affects a significant number of people and, if left untreated, leads to poor quality of life and disability. Many of the aspirations proposed for new models of care assert that better preventative services, closer integration between professionals, and increased access to cognitive behavioural therapy in primary care will bring substantial benefits and improved outcomes. The purpose of this paper is to explore the benefits of integrating mental health services into primary care, and improving collaboration between secondary services and primary care. There is a transition underway in healthcare whereby a focus on illness is being supplemented with, or refocused towards achieving better patient well-being. New approaches to service provision are being proposed that: focuses on more holistic outcomes; integrates services around the user; and employs innovative system techniques to incentivise professional and organisational collaboration. Such a transition must be inclusive of those with mental health needs managed in primary care and for those people with serious mental illness in secondary care. Design/methodology/approach This paper discusses the issues of professional collaboration and the need to provide mental healthcare in a continuous and coordinated manner and; how this may improve timely access to treatment, early diagnosis and intervention. Importantly, it is essential to consider the limitations and reality of recent integration initiatives, and to consider where the true benefit of better integrating mental health into a more collaborative system may lie. Findings Identifying and addressing issues of parity is likely to call for a new approach to service provision that: focuses on outcomes; co-designs services integrated around the user; and employs innovative contracting techniques to incentivise provider integration. Practical implications There is a transition underway in healthcare whereby a focus on illness is being supplemented with or refocused towards working towards wellness. Such a transition requires primary care mental health services to be provided in a continuous and coordinated manner in order to meet the health needs of people with serious mental illness. Originality/value It discusses the issues of professional collaboration and how this may improve timely access to treatment, early diagnosis and intervention. It is essential to consider the limitations and reality of recent integration initiatives, and to consider where the true benefit may lie.

Introduction: Integrated Development Post Program (Posbindu) is one of the facilities which provide a service for the elderly. Aside from healthcare, Posbindu also provides social, religion, education, skill, and other services. These services are needed by the elderly that makes Posbindu existence very important. According to the early researches conducted by the researcher in December 2013 at Posbindu’s Desa Dayeuhkolot, the implementations of Posbindu’s over there were still lacking. This study aimed to explore some issues of Posbindu programs in Desa Dayeuhkolot comprehensively. Method: The research design used in this research was kualitatif method approach by using case study. This research was conducted from February 2014 to January 2015 in 5 Posbindu. Result: The findings showed that the programs of Posbindu in Desa Dayeuhkolot Kabupaten Bandung still face some problems, they were: 1) Posbindu was not found based on people needs; 2) the lack of budget; 3) the lack of quality and quantity of guidance; 4) the lack of cadres’ knowledge and skills; 5) there was no incentive for cadres; 6) the lack of facilities and infrastructures; 7) the lack of emotional and physical test; 8) the lack of quality and quantity of health training program; 8) the lack of quality and quantity of health counseling ; 9) there was no access for medicine; 10) the complicated system of documentation and report ; 11) there was no elderly exercise in some posbindus; 12) the lack of effectiveness in elderly visitation program;13) the low frequency of elderly visitation; 14) the lack of posbindu contribution to the elderly; 15) the lack of support from the environment. Discussion: Posbindu’s revitalization was one of the interventions to solve the health problem caused by demographic changing. The Key point was to increase the capacity of cadre trough training.

Elderly care emphasizes the social and personal requirements of senior citizens who need some assistance with daily activities and health care, but who desire to age with dignity. With increasing rate of elderly in the society, there have been insufficient healthcare services for the elderly. Most health workers have very poor knowledge of health conditions which are common with the elderly and this lack of adequate knowledge triggers negative attitude towards the care of the elderly likely to result in serious problems in our society in the near future. This study was conducted to examine the knowledge, attitude and practice of care of elderly among health workers in tertiary health facilities in Uyo Metropolis. Three specific objectives, three research questions and three null hypotheses guided the study. The study employed a cross-sectional descriptive research design. The population of study consisted of 394 health workers. The sample of 241 health workers comprising of 27 doctors, 190 nurses, 10dentists and 14 Physiotherapist was determined using Taro Yamane and selected for the study using stratified sampling technique. The instrument used for data collection was questionnaire titled “Knowledge, Attitude and Practice of Care of Elderly Questionnaire (KAPCEQ)”. The instrument yielded the reliability coefficient of 0.84. The data were collected by the researcher and four trained research assistants. Frequency and percentage were used for the answering of the research questions while chi-square was used for testing of null hypotheses at .05 level of significance. Findings of the study indicated that health workers had adequate knowledge of care of elderly, exhibit good attitude toward care of elderly and sometimes practice care of the elderly in tertiary health facilities in Uyo Metropolis. Based on the findings of the study, the researcher recommended among others that Hospital Management Board should develop a system of periodical health workers evaluation to determine strategies of upgrading health workers knowledge and enhancing practice of care of the elderly. Furthermore, Professional bodies in the health sectors should develop a follow up courses and in-service training programmes to maintain efficient performance of individuals previously trained in the care of the elderly.

Background The COVID-19 pandemic has had a devastating impact on healthcare systems and care delivery, changing the context for patient and family engagement activities. Given the critical contribution of such activities in achieving health system quality goals, we undertook to address the question: What is known about work that has been done on patient engagement activities during the pandemic? Objective To examine peer-reviewed and grey literature to identify the range of patient engagement activities, broadly defined (inclusive of engagement to support clinical care to partnerships in decision-making), occurring within health systems internationally during the first six months of the COVID-19 pandemic, as well as key barriers and facilitators for sustaining patient engagement activities during the pandemic. Methods The following databases were searched: Medline, Embase and LitCOVID; a search for grey literature focused on the websites of professional organizations. Articles were required to be specific to COVID-19, describe patient engagement activities, involve a healthcare organization and be published from March 2020 to September 2020. Data were extracted and managed using Microsoft Excel. A content analysis of findings was conducted. Results Twenty-nine articles were included. Few examples of more genuine partnership with patients were identified (such as co-design and organizational level decision making); most activities related to clinical level interactions (e.g. virtual consultations, remote appointments, family visits using technology and community outreach). Technology was leveraged in almost all reported studies to interact or connect with patients and families. Five main descriptive categories were identified: (1) Engagement through Virtual Care; (2) Engagement through Other Technology; (3) Engagement for Service Improvements/ Recommendations; (4) Factors Impacting Patient Engagement; and (5) Lessons Learned though Patient Engagement. Conclusions Evidence of how healthcare systems and organizations stayed connected to patients and families during the pandemic was identified; the majority of activities involved direct care consultations via technology. Since this review was conducted over the first six months of the pandemic, more work is needed to unpack the spectrum of patient engagement activities, including how they may evolve over time and to explore the barriers and facilitators for sustaining activities during major disruptions like pandemics.

Objectives The study aims to investigate GPs’ experiences of how UK COVID-19 policies have affected the management and safety of complex elderly patients, who suffer from multimorbidity, at the primary care level in North West London (NWL). Design This is a service evaluation adopting a qualitative approach. Setting Individual semi-structured interviews were conducted between 6 and 22 May 2020, 2 months after the introduction of the UK COVID-19 Action Plan, allowing GPs to adapt to the new changes and reflect on their impact. Participants Fourteen GPs working in NWL were interviewed, until data saturation was reached. Outcome measures The impact of COVID-19 policies on the management and safety of complex elderly patients in primary care from the GPs’ perspective. Results Participants’ average experience was fourteen years working in primary care for the NHS. They stated that COVID-19 policies have affected primary care at three levels, patients’ behaviour, work conditions, and clinical practice. GPs reflected on the impact through five major themes; four of which have been adapted from the Safety Attitudes Questionnaire (SAQ) framework, changes in primary care (at the three levels mentioned above), involvement of GPs in policy making, communication and coordination (with patients and in between medical teams), stressors and worries; in addition to a fifth theme to conclude the GPs’ suggestions for improvement (either proposed mitigation strategies, or existing actions that showed relative success). A participant used an expression of “infodemic” to describe the GPs’ everyday pressure of receiving new policy updates with their subsequent changes in practice. Conclusion The COVID-19 pandemic has affected all levels of the health system in the UK, particularly primary care. Based on the GPs’ perspective in NWL, changes to practice have offered opportunities to maintain safe healthcare as well as possible drawbacks that should be of concern.

Background Inflammation plays a key role in the pathophysiology of coronary heart disease (CHD) and its acute manifestation, acute coronary syndrome (ACS). Aging is associated with a decline of the immune system, a process known as immunosenescence. This is characterized by an increase in highly proinflammatory T cells that are involved in CHD progression, plaque destabilization, and myocardial ischemia–reperfusion injury. Telomere dysfunction has been implicated in immunosenescence of T lymphocytes. Telomerase is the enzyme responsible for maintaining telomeres during cell divisions. It has a protective effect on cells under oxidative stress and helps regulate flow-mediated dilation in microvasculature. Objective The TACTIC (Telomerase ACTivator to reverse Immunosenescence in Acute Coronary Syndrome) trial will investigate whether a telomerase activator, TA-65MD, can reduce the proportion of senescent T cells in patients with ACS with confirmed CHD. It will also assess the effect of TA-65MD on decreasing telomere shortening, reducing oxidative stress, and improving endothelial function. Methods The study was designed as a single-center, randomized, double-blind, parallel-group, placebo-controlled phase II trial. Recruitment started in January 2019. A total of 90 patients, aged 65 years or older, with treated ACS who have had CHD confirmed by angiography will be enrolled. They will be randomized to one of two groups: TA-65MD oral therapy (8 mg twice daily) or placebo taken for 12 months. The primary outcome is the effect on immunosenescence determined by a decrease in the proportion of CD8+ TEMRA (T effector memory cells re-expressing CD45RA [CD45 expressing exon A]) cells at 12 months. Secondary outcomes include leukocyte telomere length, endothelial function, cardiac function as measured by echocardiography and NT-proBNP (N-terminal fragment of the prohormone brain-type natriuretic peptide), systemic inflammation, oxidative stress, and telomerase activity. Results The study received National Health Service (NHS) ethics approval on August 9, 2018; Medicines and Healthcare products Regulatory Agency approval on October 19, 2018; and NHS Health Research Authority approval on October 22, 2018. The trial began recruiting participants in January 2019 and completed recruitment in March 2020; the trial is due to report results in 2021. Conclusions This pilot trial in older patients with CHD will explore outcomes not previously investigated outside in vitro or preclinical models. The robust design ensures that bias has been minimized. Should the results indicate reduced frequency of immunosenescent CD8+ T cells as well as improvements in telomere length and endothelial function, we will plan a larger, multicenter trial in patients to determine if TA-65MD is beneficial in the treatment of CHD in elderly patients. Trial Registration ISRCTN Registry ISRCTN16613292; http://www.isrctn.com/ISRCTN16613292 and European Union Drug Regulating Authorities Clinical Trials Database (EudraCT), European Union Clinical Trials Register 2017-002876-26; https://tinyurl.com/y4m2so8g International Registered Report Identifier (IRRID) DERR1-10.2196/19456

Acute physicians are confronted daily by the relentless increase in clinical demand, inadequate continuity of care, breakdown in out of hours care and a looming crisis in the medical workforce. The scale and gravity of these factors, together with changes to patient’s needs relating to the ageing demography, were detailed in the RCP report published in September 2012 ‘Hospitals on the edge’. The top concern of RCP members and fellows was the lack of continuity of care, ahead of financial pressures and clinical staff shortages. Worryingly one in ten physicians stated they would not recommend their hospital to a family member, and a further 25% were ambivalent on this question. Concern about the provision of acute medical care is not confined to consultants and specialist registrars. Another RCP report, ‘Hospital workforce, fit for the future?’ (2013) highlighted that 37% of FT2s and CMTs considered the workload of the medical registrar on call ‘unmanageable’. The outcome of the Mid Staffs independent inquiry in February 2013 provided critical context for the launch of the Future Hospital Commission (FHC) report, which was launched seven months later in September. The report was met with an extremely positive response from patients, carers, NHS staff, healthcare leaders and politicians. Lancet Editor Richard Horton said that the Commission had ‘produced the most important statement about the future of British medicine for a generation.’ Secretary of State for Health Jeremy Hunt praised the report and its ‘buck stops here’ approach. The Daily Mirror even noted that the report was one of the few areas on which the government and the opposition could agree! ‘Future Hospital: caring for medical patients’ places the patient at the centre of healthcare. Organising healthcare delivery around the needs of the patient is at its heart and features extensively in the core principles and 50 recommendations. A series of unequivocal commitments were made to patients, on issues generating considerable patient concern: moving beds in hospital, quality of communication and arrangements to leave hospital. Patients and carers were represented in each of the Commission’s five work streams, led on the recommendations relating to building a culture of compassion and respect, and participated in launch of the report to the media. The primary focus of the FHC report is on the acute care of medical patients and the views of acute physicians were key to articulating these recommendations. However the report is clear that the solution to current acute pressures on hospitals and specifically in-patient pathways, lie across the whole health and social care system. Care must be delivered in the setting in which the patient’s clinical, care and support needs can best be met and not merely delegated to the acute hospital site. This inevitably means 7 day services in the community as well as in hospital and a consistent new level of “joined up care” with integration, collaboration and information sharing across hospital and all healthcare settings. In keeping with this the report highlights the urgent need to establish alternatives to hospital admission including the extensive use of ambulatory emergency care (AEC), the provision of secondary care services in the community and an expansion of intermediate care rehabilitation services. Many of the report’s recommendations arose from clinical staff devising innovative solutions to improve the quality of care and ameliorate clinical demand. The report showcased a range of case studies describing service developments and new patterns of care, innovations that would not have been possible without the leadership and sheer determination of physicians and their teams. Dr Jack Hawkins, Acute Physician in Nottingham Queen’s Medical Centre, described how analysis of performance data showing that 50% of acute medical patients were discharged within 15 hours, led to the starting vision for their new AEC service as “everyone is ambulatory until proven otherwise”. The case studies highlight the resources needed to implement service change and the supportive staff relationships and changes to working practices that underpin their success. The report describes the “acute care hub” as the focus of acute medical services, comprising colocation of the AMU, short stay wards, enhanced care beds and the AEC. Much of this echoes the front door configuration described by the acute medicine task force report in 2007 ‘Acute medical care: The right person, in the right setting, first time’. What the FHC adds are recommendations to co-locate AEC and a clinical co-ordination centre to provide clinicians with real time data on capacity in community-based services (rehabilitation and social services), and link to rapid access specialist clinics or community services to support pathways out of AEC and AMU. Recommendations to structure acute services to maximise continuity of care is a major theme. There should be sufficient capacity in the acute care hub to accommodate admitted patients who do not require a specialist care pathway and are likely to be discharged within 48 hours. This is supported by recommended changes to working practices of consultant led teams where they commit to two or more successive days working in the hub. This allows the consultant led team who first assess the patient in AMU to continue to manage them on the short stay ward through to their discharge – an approach familiar to acute physicians but which may be novel to GIM physicians assigned a single on call day. Striving to deliver continuity by a stable clinical team should also simplify handover, improve training, feedback and the quality and safety of the care delivered. The commission recommends designating enhanced care (level 1) and high dependency (level 2) beds in the acute care hub to improve the care of acutely ill patients requiring an increased intensity of monitoring and treatment. The RCP acute medicine taskforce made the same recommendation in 2007 but acute trusts have been slow to embed level 2 beds in particular, on AMUs. In the future hospital every effort should be made to enhance rapid access to specialist pathways that benefit patients, including entry to pathways for acute coronary disease or stroke or the frail elderly direct from the community or emergency department. Here the report is clear that the responsibility for continuity of care rests with the specialty consultant, who should review the patient on the day of admission. Patient experience should be valued as much as clinical effectiveness. Patients want “joined up care” that is tailored to their acute illness, comorbidities and requirements for social support. From a patient’s perspective, failures of information sharing between primary and secondary care, or specialist services within the same or neighbouring Trusts, are incomprehensible. The report highlights that this informatics disconnect undermines accurate clinical assessment at the time of presentation with an acute illness, when patients are most vulnerable, and this deficit will impact on patient experience, timely access to specialist staff, patient outcome and resource use. Robert Francis, in commenting on the report of the Mid Staffordshire public enquiry highlighted that the subject was ‘too important to suffer the same fate as other previous enquiries .. where after initial courtesy of welcome, implementation was slow or non existent’. The RCP shares this urgency and having accepted the recommendations of the FHC as a comprehensive ‘treatment’ for the care of patients in the future hospital, is determined that the FHC report itself will not sit on a shelf, gathering dust. The RCP is now embarking on a future hospital implementation programme. This programme gathers momentum this month with the appointment of future hospital officers and staff and the immediate priority is to identify partners to set up national development sites. The RCP is seeking enthusiastic clinical teams to investigate changes to a range of hospital and community based medical services in line with the FHC principles and to evaluate the impact on patient care. Over the next 3 years it is envisaged that the programme will also include research and new approaches to commissioning, workforce deployment, healthcare facility design and integrated working across the health economy. The evaluation of these projects, in relation to the quality and safety of patient care and patient experience, will be crucial and will be shared through the RCP and its partners. In addition, from April the RCP will publish a Future Hospital journal to help share the learning from the implementation programme and welcomes submissions of innovative best practice in acute care. The challenge now is to convert the goodwill generated by publication of the FHC principles, into an implementation programme nationally, that helps build an effective evidence base to support new ways of providing high quality, safe, patient care. Acute physicians are crucial partners in meeting this challenge.

Breast cancer is the most common cancer among women in the world. As China enters the aging society, elderly breast cancer presents the characteristics of high incidence, late detection and long treatment time. This is related to the imperfect services that elderly women receive in the treatment and rehabilitation. Eventually, the HRQOL (health-related quality of life) in their later years has declined. By using service design tools, the authors conducted field research and in-depth interviews in Shanghai hospitals and developed service strategy to improve the Health-Related Quality of Life (HRQOL) in the treatment and rehabilitation of elderly women with breast cancer. The paper presents three design contents: (1) smart healthcare service system; (2) improvement of service scenarios in the hospital; (3) a life-long service that links communities, families, and individuals to transform breast cancer into "chronic disease". In this paper, the authors also discuss the next step and prospects.

BackgroundWith the trend of world population aging, a good community health care system will determine whether the elderly can get good medical conditions. How to improve the community health care system can study how the behavior of the elderly affects it.ObjectiveThis paper is based on the analysis of the current situation of population aging at home and abroad.MethodsOn the premise of analyzing the demand and behavior of elderly people seeking medical treatment and the function of community health service institutions. Literature research was conducted to analyze the influencing factors of community health care needs and elderly people's medical seeking behavior at home and abroad. Then the elderly in Tianjin were investigated by issuing questionnaires, and the law of medical treatment behavior of the elderly in Tianjin was calculated. Combined with the results of relevant investigations abroad, the common phenomenon is summarized. Finally, the analysis method of intelligent medical system is proposed, and the design process of system acquisition module and user usage mode are given.ResultThe smart medical system can bring great convenience to the elderly and community healthcare.DiscussionIt emphasizes the powerful functions of smart health systems and their future importance for the health care of the elderly.

Abstract Background Universal Design is a design process that enables people of all ability levels by improving human performance, wellness and social participation. The research aims at developing a performance-based assessment tool adopting Universal Design to enhance users' benefits and positive outcomes such as usability, well-being and social inclusion focusing on healthcare environment. Methods The evaluation framework resulted by different methodologies: a systematic literature review on existing Universal Design tools; workshops with both users and experts and the analysis of hospital case studies. Multi-criteria analysis is adopted as methodology to develop a hierarchical framework able to compare quantitative and qualitative aspects of the same project. A rating system based on a checklist is used to evaluate performance. Results The tool structure is based on a hierarchical framework composed by 3 Categories (Physical/spatial quality; Sensorial/cognitive quality and Social quality); 8 Criteria (Usability, Functionality, Safety and Security, Wayfinding, Understanding, Environmental factors, Well-being and Social Inclusion); 20 Indicators and a plurality of requirements. Since the needs of users (patients, visitors, staff) change in relation to the space setting, the tool assess the quality considering different areas of the hospital: Outdoor Spaces, Entrance, Interior Circulation, Support Spaces (waiting areas, bathrooms, food services), Work Spaces (exam rooms, offices) and Overall Service. Conclusions The proposed tool can foster public health supporting the management of healthcare environment in taking decisions on universal usability and multisensory quality perception through a performance-based approach. The tool has been validated in a hospital of the State of New York, focusing on public areas and outpatient department. Further applications in various healthcare facilities of the Italian context are aimed to implement the tool. Key messages The assessment tool aims to support designers and healthcare management from the beginning of the design project to ensure public health and inclusive design through a performance-based approach. The tool based on Universal Design allows to evaluate spatial, sensory and social quality considering the relation between hospital areas and users’ needs that influence people’s well-being.

Using sensors in healthcare can greatly improve the quality of life, especially for elderly patients. The data from the sensors of the patients is constantly monitored for abnormalities at a server. Whenever this data crosses a threshold value, the information is notified to the corresponding doctor. The doctor can then take the necessary action. However an inspection of historical data has shown that some conditions of patients have cyclic patterns and the medications are often repeated. The proposed system is designed to assist the doctor in diagnosis by retrieving those patterns. We have compared the times taken for receiving responses from the two different systems and a significant amount of improvement was noticed. We have introduced a Dynamic Context Aware Technique (DCAT) which can improve the quality of 24 hour monitoring patient. This paper presents the design and implementation of a system based on DCAT using SAMSUNG GEAR S (Heart rate monitor sensor.The backend remote centralized computation and data storage can decreases the workload of the remote health care provider by avoiding of sending the identical and similar cases data to the doctors. This improves the processing speed and also gives solutions in case of the unavailability of doctors in some cases. Experimental results based on real datasets show that our system is highly efficient and scalable to a long time monitoring patients.

Abstract Background Design for All (DfA) strategy addressing human diversity, social inclusion and equality, can have an impact on users' well-being in healthcare facilities. However, evaluation tools are needed to identify the extent to which DfA influences users' experience and service quality. This study explores the application of the Design for All A.U.D.I.T. (Assessment Usability Design & Inclusion Tool). Methods The tool's structure is based on a multicriteria framework that evaluate hospital areas through a rating system. The hierarchical framework includes three Categories of DfA outcomes (Physical-spatial quality; Sensorial-cognitive quality and Social quality) with related criteria, indicators and requirements. The tool has been applied in the evaluation of two private hospitals, one in Buffalo (US) and one in Milan (Italy). Results The analysis of findings addressed both spatial and DfA qualities. For spaces, Horizontal circulation had the best scores in both hospitals (76% Italy, 88% US). The Italian hospital Vertical circulation had the lowest score (46%), while in the Buffalo facility Outdoor spaces had the lowest scores. Regarding DfA qualities, the Italian hospital obtained the highest score in Environmental Factors (84%), due to a sustainable design approach, while Social Inclusion got the lowest score (54%). The Buffalo facility scored higher on Social Inclusion (87%) because it provides diverse services for users. Both the hospitals had problems with Wayfinding due to layout and signs, scoring low on this criterion (59% Italy, 39% US). Conclusions The analysis of the hospitals demonstrated that the tool can evaluate spaces and DfA outcomes along dimensions of health and well-being. The system can be used to identify critical aspects and suggest design strategies, defining priorities for interventions. Further research directions will consider applications in different hospitals to ensure the tool scalability and application to new building projects. Key messages The evaluation tool enhances Public Health by measuring hospital quality in terms of Design for All and user needs. The tool can be applied in the decision-making process during design and renovation of specific areas of hospitals to implement Inclusive Design.

Abstract Background Inclusive engagement in healthcare policies and decision-making is essential to address the needs of patients and communities, reduce health inequities and increase the accountability of the government. In low income countries such as Malawi, with significant health challenges, stakeholder inclusion is particularly important to improve performance and service delivery. The 2017 National Health Plan II (NHP II) and accompanying Health Sector Strategic Plan II (HSSP II) aimed to improve the functioning of the healthcare system. The Ministry of Health for Malawi intended to involve all key health sector stakeholders in their development. This study explores the extent of stakeholder engagement in the health policy process through local level stakeholders’ perceptions of their involvement in the NHP II and HSSP II. Methods A qualitative study design was used. Interviews were conducted with 19 representatives of organisations operating at the local level, such as CSOs and local government. Open questions were asked about experiences and perceptions of the development of the NHP II and HSSP II. Inductive content analysis was performed. Results Stakeholders perceived barriers to inclusive and meaningful engagement in the health policy process. Five categories were identified: tokenistic involvement; stakeholder hierarchy; mutual distrust; preferred stakeholders; no culture of engagement. Conclusions Serious challenges to the meaningful and equitable engagement of local level stakeholder groups in the health policy process were identified. Issues of trust, accountability and hierarchy in donor-citizen-government relations must be addressed to support stakeholder engagement. Engagement must go beyond tokenism to embed a range of stakeholders in the process with feedback mechanisms to ensure impact from their contributions. Local level stakeholders can be empowered to advocate for and participate in consultation exercises alongside greater top-down efforts to engage stakeholders via diverse and inclusive methods. These issues are not unique to Malawi or to health policy-making.

Abstract Background Public health systems internationally are under pressure to meet increasing demand for healthcare in the context of increasing financial resource constraint. There is therefore a need to maximise health outcomes achieved with public healthcare expenditure. This paper aims to establish and synthesize the contemporary evidence base for approaches taken at a system management level to improve efficiency. Methods Rapid Evidence Assessment (REA) methodology was employed. A search strategy was developed and applied (PUBMED, MEDLINE) returning 5,377 unique titles. 172 full-text articles were screened to determine relevance with 82 publications included in the final review. Data regarding country, study design, key findings and approaches to efficiency improvement were extracted and a narrative synthesis produced. Publications covering health systems from developed countries were included. Results Identified study designs included policy reviews, qualitative reviews, mixed methods reviews, systematic reviews, literature reviews, retrospective analyses, scoping reviews, narrative papers, regression analyses and opinion papers. While findings revealed no comprehensive frameworks for system-wide efficiency improvement, a range of specific centrally led improvement approaches were identified. Elements associated with success in current approaches included dedicated central functions to drive system-wide efficiency improvement, managing efficiency in tandem with quality and value, and inclusive stakeholder engagement. Conclusions The requirement for public health systems to improve efficiency is likely to continue to increase. Reactive cost-cutting measures and short-term initiatives aimed only at reducing expenditure are unlikely to deliver sustainable efficiency improvement. By providing dedicated central system-wide efficiency improvement support, public health system management entities can deliver improved financial, health service and stakeholder outcomes.

Abstract Background Little is known about actual involvement or how to achieve service user and caregiver in mental health systems strengthening in low-and middle-income countries. This study describes the processes and explores involvement experiences of participants in a pilot study of a new model of service user involvement in mental health system strengthening in a rural district in southern Ethiopia. Methods We applied a case study design using participatory action research (PAR). The PAR process comprised of three stages, each with iterative activities of plan, act, observe and reflect. Two stakeholder groups, a Research Advisory Group (RAG) and Research Participant Group (RPG), were established and collaborated in the PAR process. Data collection involved process documentation of meetings and activities: attendances, workshop minutes, discussion outputs, reflective notes, participatory observation of sessions, and in-depth interviews with 12 RPG members. We analyzed the process data descriptively. Thematic analysis was used for qualitative data. Triangulation and synthesis of findings was carried out to develop the case study. Results The stakeholder groups identified their top research priorities, developed an intervention and action plan and made a public presentation of preliminary findings. Key mechanisms used for inclusive participation included capacity building and bringing together diverse stakeholders, anchoring the study in established strong community involvement structures, and making use of participatory strategies and activities during the PAR process. Four themes were developed about experiences of involvement in PAR: (i) expectations and motivation, (ii) experiences of the dynamics of the PAR process, (iii) perceived impacts of involvement in the PAR process, and (iv) implementation challenges and future directions. Conclusions This case study demonstrated the feasibility and acceptability of implementing a complex model of service-user involvement in mental health system strengthening in a resource constrained setting. More needs to be done to embed service-user involvement into routines of the primary healthcare system, alongside sustained support and strengthening multi-stakeholder collaboration at multiple levels.

AbstractInternet of things (IoT) enables machine-to-machine, human-to-human and machine-to-human interaction. Recent advancement in IoT systems has positively impacted the daily activities of humans, from accessing information to the delivery of service in real-time. This has improved healthcare management and services, especially in medical hospitals, for effective and timely access to diagnostic information and treatment of patients. Several existing research mainly focused on the design of IoT architecture, its challenges, and benefits to human society with minor or without considering applying IoT in the healthcare domain. To bridge this gap, this study investigates the implications of IoT integration in the healthcare management domain. It presents a detailed discussion on IoT utilization to improve the functionalities of hospital management system. It also discusses some potential emerging innovations that aids the development and application of IoT in hospital management systems. Investigations show that healthcare personnel can administer treatments to patients anytime–anywhere. Patients, especially the elderly are administered treatment, as well as monitoring their wellbeing while at home with the support of wearable sensor devices. Also, some of the challenges that impedes the integration of IoT application into healthcare domain includes generation of irrelevant huge amount of data, issues of security and privacy of patient information and high cost of IoT adoption. Furthermore, the future research trends in adoption of IoT to improve healthcare domain includes stroke and epileptic seizure predictions and prosthetic sensors which is used to retrieve relevant data or information to aid the treatment of a patient in real-time.

Abstract Background The widely available informal healthcare providers (IHPs) present opportunities to improve access to appropriate essential health services in underserved urban areas in many low- and middle-income countries (LMICs). However, they are not formally linked to the formal health system. This study was conducted to explore the perspectives of key stakeholders about institutionalizing linkages between the formal health systems and IHPs, as a strategy for improving access to appropriate healthcare services in Nigeria. Methods Data was collected from key stakeholders in the formal and informal health systems, whose functions cover the major slums in Enugu and Onitsha cities in southeast Nigeria. Key informant interviews (n = 43) were conducted using semi-structured interview guides among representatives from the formal and informal health sectors. Interview transcripts were read severally, and using thematic content analysis, recurrent themes were identified and used for a narrative synthesis. Results Although the dominant view among respondents is that formalization of linkages between IHPs and the formal health system will likely create synergy and quality improvement in health service delivery, anxieties and defensive pessimism were equally expressed. On the one hand, formal sector respondents are pessimistic about limited skills, poor quality of care, questionable recognition, and the enormous challenges of managing a pluralistic health system. Conversely, the informal sector pessimists expressed uncertainty about the outcomes of a government-led supervision and the potential negative impact on their practice. Some of the proposed strategies for institutionalizing linkages between the two health sub-systems include: sensitizing relevant policymakers and gatekeepers to the necessity of pluralistic healthcare; mapping and documenting of informal providers and respective service their areas for registration and accreditation, among others. Perceived threats to institutionalizing these linkages include: weak supervision and monitoring of informal providers by the State Ministry of Health due to lack of funds for logistics; poor data reporting and late referrals from informal providers; lack of referral feedback from formal to informal providers, among others. Conclusions Opportunities and constraints to institutionalize linkages between the formal health system and IHPs exist in Nigeria. However, there is a need to design an inclusive system that ensures tolerance, dignity, and mutual learning for all stakeholders in the country and in other LMICs.

Abstract Background Planning to transition from the Minimum Initial Service Package for Sexual and Reproductive Health (SRH) toward comprehensive SRH services has been a challenge in humanitarian settings. To bridge this gap, a workshop toolkit for SRH coordinators was designed to support effective planning. This article aims to describe the toolkit design, piloting, and final product. Methods Anchored in the Health System Building Blocks Framework of the World Health Organization, the design entailed two complementary and participatory strategies. First, a collaborative design phase with iterative feedback loops involved global partners with extensive operational experience in the initial toolkit conception. The second phase engaged stakeholders from three major humanitarian crises to participate in pilot workshops to contextualize, evaluate, validate, and improve the toolkit using qualitative interviews and end-of-workshop evaluations. The aim of this two-phase design process was to finalize a planning toolkit that can be utilized in and adapted to diverse humanitarian contexts, and efficiently and effectively meet its objectives. Pilots occurred in the Democratic Republic of Congo for the Kasai region crisis, Bangladesh for the Rohingya humanitarian response in Cox’s Bazar, and Yemen for selected Governorates. Results Results suggest that the toolkit enabled facilitators to foster a systematic, participatory, interactive, and inclusive planning process among participants over a two-day workshop. The approach was reportedly effective and time-efficient in producing a joint work plan. The main planning priorities cutting across settings included improving comprehensive SRH services in general, healthcare workforce strengthening, such as midwifery capacity development, increasing community mobilization and engagement, focusing on adolescent SRH, and enhancing maternal and newborn health services in terms of quality, coverage, and referral pathways. Recommendations for improvement included a dedicated and adequately anticipated pre-workshop preparation to gather relevant data, encouraging participants to undertake preliminary study to equalize knowledge to partake fully in the workshop, and enlisting participants from marginalized and underserved populations. Conclusion Collaborative design and piloting efforts resulted in a workshop toolkit that could support a systematic and efficient identification of priority activities and services related to comprehensive SRH. Such priorities could help meet the SRH needs of communities emerging from acute humanitarian situations while strengthening the overall health system.

Abstract Background Vouchers are increasingly used as a demand-side subsidy to reduce financial hardship and improve quality of services. Elderly Healthcare Voucher Scheme has been introduced by the Hong Kong Government since 2009 to provide subsidy to elderly aged 65 and above to visit ten different types of private primary care providers for curative, preventive and chronic disease management. Several enhancements have been made over the past few years. This paper (as part of an evaluation study of this unique healthcare voucher scheme) aims to assess the long term impact of the voucher scheme in encouraging the use of primary care services. Methods Two rounds of cross-sectional survey among elderly in Hong Kong were conducted in 2010 and 2016. Propensity score matching and analysis were used to compare changes in perception and usage of vouchers over time. Results 61.5% of respondents in 2016 agreed “the scheme encourages me to use more private primary care services”, a significant increase from 36.2% in 2010. Among those who agreed in 2016, the majority thought the voucher scheme would encourage them to use acute services (90.3%) in the private sector, rather than preventive care (40.3%) and chronic disease management (12.2%). Respondents also reported that their current usual choice of care was visiting “both public and private doctors” (61.9%), representing a significant increase (up from 48.4%) prior to their use of voucher. Conclusions The voucher scheme has encouraged the use of more private care services, particularly acute services rather than disease prevention or management of chronic disease. However, there needs to be caution that the untargeted and open-ended nature of voucher scheme could result in supply-induced demand which would affect long term financial sustainability. The dual utilization of health services in both the public and private sector may also compromise continuity and quality of care. The design of the voucher needs to be more specific, targeting prevention and chronic disease management rather than unspecified care which is mainly acute and episodic in order to maximize service delivery capacity as a whole for equitable access in universal health coverage and to contribute to a sustainable financing system.

Purpose Access to health-care services for refugees are always impacted by many factors and strongly associated with population profile, nature of crisis and capacities of hosing countries. Throughout refugee’s crisis, the Jordanian Government has adopted several healthcare access policies to meet the health needs of Syrian refugees while maintaining the stability of the health-care system. The adopted health-care provision policies ranged from enabling to restricting and from affordable to unaffordable. The purpose of this paper is to identify the influence of restricted level of access to essential health services among Syrian refugees in Jordan. Design/methodology/approach This paper used findings of a cross-sectional surveys conducted over urban Syrian refugees in Jordan in 2017 and 2018 over two different health-care access policies. The first were inclusive and affordable, whereas the other considered very restricting policy owing to high inflation in health-care cost. Access indicators from four main thematic areas were selected including maternal health, family planning, child health and monthly access of household. A comparison between both years’ access indicators was conducted to understand access barriers and its impact. Findings The comparison between findings of both surveys shows a sudden shift in health-care access and utilization behaviors with increased barriers level thus increased health vulnerabilities. Additionally, the finding during implementation of restricted access policy proves the tendency among some refugees groups to adopt negative adaptation strategies to reduce health-care cost. The participants shifted to use a fragmented health-care, reduced or delayed care seeking and use drugs irrationally weather by self-medication or reduce drug intake. Originality/value Understanding access barriers to health services and its negative short-term and long-term impact on refugees’ health status as well as the extended risks to the host communities will help states that hosting refugees building rational access policy to protect whole community and save public health gains during and post crisis. Additionally, it will support donors to better mobilize resources according to the needs while the humanitarian actors and service providers will better contribute to the public health stability during refugee’s crisis.

Photo by Evgeni Tcherkasski on Unsplash ABSTRACT Public health ethics has been contingent on a political landscape leading to several operational hurdles, especially during global health emergencies. Several scholars have pointed out that liberal decision-making has prevented public health institutions from achieving their goals. Thus, the need for a substantive outlook on public health has never been stronger. First, this article highlights the ethical tension and limitations of a presumptive approach to public health that a vaccination policy might produce in a liberal political landscape. Second, influenced by the works of Angus Dawson, this article emphasizes the importance of a substantive approach to public health, especially in a post-COVID era. Last, it looks at how TM Scanlon’s theory of contractualism aids in framing a substantive approach to health policy design and the added advantages of the theory. INTRODUCTION A public health intervention like a vaccination program for COVID-19, let alone a mandatory one, faces difficulties in implementation as it presents a clash between the role of the government and liberty of its citizens.[1] The clash stems from public health operating in a liberal political landscape that accords great regard for individual liberty. The government, in good conscience, is right in feeling morally obligated to act in ways that serve to prevent the pandemic from escalating. To represent the citizens, governments and policymakers prioritize achieving and maintaining herd immunity. The tension of the state versus individual liberty questions the extent to which governments can go to implement a vaccination policy. In trying to balance the considerations of individual liberty and the scope of the state to impose an intervention, the Nuffield Council on Bioethics came up with a design known as the ‘intervention ladder.’[2] The takeaway from the intervention ladder is that the state has the burden of proof in justifying reasons for implementing a particular policy.[3] Such justified trade-offs envisioned from the intervention ladder have guided policymakers in their attempt to design and shape interventions. However, public health ethics and even the intervention ladder view public health through a presumptive or a moderate liberal lens.[4] In a presumptive approach or a moderate-liberal approach to public health, policymakers regard values like liberty or autonomy as more prominent when weighed against values like creation of public goods and their maintenance.[5] A libertarian approach favors liberty and autonomy even more strongly. The substantive view of public health holds that values, such as liberty and autonomy, do not automatically hold precedence over community-oriented values such as public goods creation.[6] Some have critiqued the intervention ladder endorsed by the Nuffield Council of Bioethics. Angus Dawson remarks that the intervention ladder as a metaphor prevents the act of climbing. He claims the ladder assumes that liberty is the only guiding principle in policymaking. Such a view neglects any responsibility the citizens have in achieving public goods and maintaining them.[7] The emphasis on the drawbacks of a presumptive approach, especially in a situation like the COVID-19 pandemic, leads us to question should public health undergo a redefinition? The approach in public health focusing on non-interference stems from traditional clinical bioethics.[8] However, I argue that public health ethics in a pandemic should accord less emphasis to individual liberty and evaluate every ethical value on a level playing field. Individual liberty provides less platform for action in situations where the community has not established herd immunity. Accountability for the harm principle and maintenance of public goods override concerns surrounding liberty.[9] Angus Dawson argues that with more participation in a vaccination program, protection of public goods from disease can be created faster.[10] Characterizing public health as an antagonist to individual liberty undermines the confidence in public health institutions and interventions for which public trust is vital. Although the government may propose a mandatory vaccination policy when voluntary measures fail to meet public health requirements, clear scientific evidence and accountability for public welfare should be the guiding principle. Thus, resetting the parameters gauging a public health intervention is the starting point to prepare for future pandemics. In Resetting the Parameters, Angus Dawson suggests that utilitarianism or contractualism could serve as philosophical frameworks that may aid in framing a substantive approach to public health.[11] Evaluating utilitarianism and contractualism according to the COVID-19 facts would help clarify which is better suited to framing a substantive public health approach. l. Is Utilitarianism Substantive? Under utilitarianism, the morbid circumstances of the COVID-19 pandemic urge us to act in ways that translate to maximizing the overall good. Utilitarianism is a philosophical theory that prides itself on maximizing the best of outcomes for the maximum number of people. In an ideal utilitarian framework, a morally right act does good for all. Utilitarians consider utility the single determining variable that should guide actions.[12] The actionable aspect of a utilitarian framework is its ability to quantify thresholds or markers that mostly dwell in the abstract. In Utilitarianism and the Pandemic, Savulescu et al. outline certain determinants as aids in applying utilitarianism.[13] Looking at the aids in the context of a mandatory vaccination policy in light of COVID-19, shows some pitfalls of utilitarianism. The first utilitarian aid is to save the maximum number of lives.[14] Rightly so, an intuitive starting point in a pandemic with striking mortality rates is attempting to save the most lives. However, implementing and justifying a policy with the aim of saving the highest number of lives is complex. While a high number of deaths is a concern, it is reductionist to concentrate only on the end goal and not the means through which such a goal is attained. The second utilitarian aid is the length of life.[15] The length of benefit gained from an outcome is crucial for utilitarians. The duration of a benefit determines the quantity of good produced. As an extension, younger people should then, theoretically, count for more than older individuals in prioritizing benefits. Such prioritization has been a matter of concern during the COVID-19 pandemic. While it is true that younger people might tend to benefit more, the pathology of COVID-19 goes against such logic. Elderly populations have experienced disproportionately more severe cases. Therefore, prioritizing youth when the elderly are suffering more of the harm would be ethically contentious.[16] The third utilitarian aid is the quality-of-life post-intervention.[17] Through measures such as QALYs and DALYs,[18] utilitarians have attempted to quantify each individual's quality after an intervention. This quantification can result in connecting an individual’s quality of life to their social worth. From a utilitarian viewpoint, a person's ability to produce relevance in society becomes a key determinant in shaping public policy. By extension, people born with disabilities such as mental illness or late-stage dementia can be overlooked merely because they lack "social value.”[19] And yet, “taboo trade-offs occur when we are forced to put a finite monetary value on these sacred values [life, health, ability], when we acknowledge that there is a maximum ‘price’ that we want to pay to uphold values that should be of ‘infinite’ value.” [20]. As such, it is unethical to place a value on someone's life based on the duration or quality of life they may have after an intervention. Besides creating difficulty in assessing the quality of life, measures such as QALYs do not address the nuances in providing healthcare. In Economic Evaluation of Mental Health Interventions, Luyten et al. discuss several operational changes that account for these nuances.[21] Utilitarians believe in a moral indifference between actions and omissions as the fourth aid.[22] It does not matter how a result is achieved as long as it benefits the common good. Putting forward a bad policy is the same as not putting forward a policy. In the ever-changing and unpredictable dynamics of the COVID-19 pandemic, actions and omissions have different moral implications. Equating them often places an unfair burden on lawmakers, leaving them emotionally and morally exhausted as they weigh the advantages and risks of various outcomes. Actively avoiding social biases, feelings, intuitions, and heuristics is the fifth aid.[23] The pandemic elicits strong feelings and aggressively tests beliefs. During the pandemic, some profoundly troubling ethical dilemmas stemmed from bias. In a utilitarian system, a mandatory vaccination policy aimed at crossing the threshold for herd immunity may overlook groups of people who are vulnerable due to a lack of access to the social determinants of health. Attempting to avoid feelings and intuitions all the time does not always result in the creation of a fair policy. Anti-vaccination activists use emotion to further their cause, hence it is critical that politicians consider the feelings at stake for the general public when enacting a mandatory vaccination policy. While utilitarianism has benefits such as developing simple operationalizable concepts, providing a quantitative check, and a balance sheet of risks and benefits, it is based on an ethical dystopia. Utilitarian policies can treat people as a means to an end by focusing solely on outcomes. Utilitarianism rests on a presumptive outlook toward public health by replacing liberty with utility. It ignores fair and just distribution and allocation of resources. Utilitarianism is not the most ethical approach to pandemic vaccination policy. ll. Is Contractualism Substantive? The libertarian and utilitarian frameworks assume positive and negative connotations to different actions. They hold that certain acts are right and certain acts are wrong. A libertarian might hold that unnecessary infringement of individual liberty is not acceptable, while a utilitarian might be of the opinion that actions that contribute to disutility are unfavorable for the promotion of the greatest happiness principle.[24] Contractualism is a philosophy that values the social contract. A contractualist approach begins its discourse by arguing that actions have inherent neutrality.[25] By saying that, “being valuable is not always a matter of being ‘to be promoted’”[26], Scanlon does not neglect the value of certain actions but urges us to respond to value through other means, as well as to find value in plurality. In What We Owe to Each Other, Scanlon finds morality through the ability to reason while attributing inherent neutrality to our actions. A discourse in contractualism does not begin by presuming that values such as liberty or autonomy hold precedence among other ethical values, i.e., it is not presumptive in its approach. Instead, he locates morality in the ability to reason and find justifications for certain actions. Thus, compared to utilitarianism, contractualism allows for a substantive approach by holding all the relevant ethical values in a level playing field. Liberty would gain precedence when justifications for safeguarding it are strong and cannot be reasonably rejected. The same goes for other values, such as promoting public goods. In short, an action is termed wrong when “the principle that allows for it, can be reasonably rejected.”[27] For Scanlon, justifiability to others is the normative determinant of right or wrong.[28] He proceeds to say that the value of justifiability is the underlying premise of our duties. Additionally, Verweij argues that treating people rationally occurs by treating them in “ways they cannot reasonably reject.”[29] By disregarding any a priori assumptions about the importance of different values, people can find and construct values that cannot be reasonably rejected as they would be justified. Scanlon believes that this can be attained if we reflect on what we owe to each other. lll. The Inherent Moral Neutrality Allows for a Substantive Approach A contractualist approach has implications for framing a substantive approach to public health. These values have been adapted from Scanlon and Verweij, and the elaboration has been framed in the context of COVID-19. The inherent neutrality of principles that contractualism holds becomes crucial while devising a public health intervention. The COVID-19 pandemic presents a situation where otherwise acceptable ethical principles require scrutiny. A blank state where there are no a priori principles that suggest which acts are morally justified and which are not helps us navigate the operational principles involved in a vaccination policy. Thus, values such as liberty, utility, and autonomy are viewed on the same level as the creation of public goods, fairness in contribution, and avoiding collective harm. a. Arriving at Principles Starting with the inherent neutrality, the state, policymakers, and the public can identify ethical principles that would form a part of the vaccination policy smorgasbord. In a public health framework where negotiation is a crucial aspect in its implementation, it is important that all the stakeholders aim to find principles that are acceptable for everyone. This would culminate with principles of action that would produce the least number of complaints by all the parties involved. If an individual has very strong reservations against a principle, these cannot be outweighed by weaker reservations held by others.[30] b. Reasonable Rejection as a Marker of Deliberation A mandatory vaccination policy in a contractualist framework would then have to incorporate reasonable rejection. A framework based on reasonable rejection includes a variety of moral considerations that shape well-being and provide a basis for fairness, choice, and responsibility. Scanlon makes an important remark in the thesis of What We Owe to Each Other: the acceptability of a principle depends on a one-by-one assessment of the strength of individuals' reasons for rejecting the principles compared to any existing alternatives. In other words, for Scanlon, what is foundational for contractualism is not minimizing what is undesirable but constructing principles no one can reasonably reject. In the context of COVID-19, a person should be able to justify the level of precaution he takes to anyone who would bear the risk of exposure. Each individual would then have strong reasons for contributing to herd immunity with regard to their duty to protect the vulnerable. The justification to forego vaccination would need to be strong.[31] The difference in a contractualist approach is that it provides a platform for valid concerns from the public. This allows more room for dialogue and for individual liberty, which seems to form a significant part of the critique. A plan of action that allows for individual concerns such as safety, efficacy, and strong medical reasons to forego vaccination encourages inclusivity in policymaking. Another public concern is that public health institutions have alienated themselves from society in general.[32]A dialogue between the stakeholders would remedy such a notion and help redefine public health according to how Dawson and Verweij view “public”– as a social entity/target as well as a mode of intervention (requiring collective action).[33] Contractualism, like the rest of the ethical frameworks, has its own set of critiques. In Obligatory Precautions Against Infection, Marcel Verweij argues that a contractualist theory inadvertently ends up asking for excessive precautions. The first claim that contractualism asks for excessive precautions arises from the fact that a contractualist approach does not consider the consequences of individual actions.[34] He believes that since consequences are not weighted, one individual’s wish to forego precautionary measures does not justify another’s non-compliance towards precaution, culminating in the other having to take excessive precautions. He also criticizes the contractualist deliberation for its failure to focus on the consequences of individual acts but on creating universalizable principles.[35] While this may seem true, such a conclusion rests on the fact that the consequences of individual acts are not weighted. However, an excerpt from Verweij’s paper offers evidence that contractualism does weigh individual acts: Suppose that we both aim to find moral principles that regulate our interaction and that can be accepted by both of us. If you then propose a principle that imposes many risks on me but none for you, then it would be reasonable if I were to reject it (especially if there are alternative principles that would yield much lower risks).[36] Both a consequentialist approach and a contractualist approach share the language of risks and burdens. For the utilitarian, risks and burdens are consequences of an action, whereas, for the contractualist, they are consequences of accepting or rejecting a principle. In the excerpt above, when an individual assesses the risks imposed, a consequentialist way of thinking is incorporated in contractualism and consequences to individuals do matter and are weighed. Verweij’s contention that a contractualist approach does not focus on individual consequences is not supported, and, as a logical extension, the argument of excessive precautions begins to fade. Being vaccinated would absolve us of having to take excessive precautions. Upon crossing the threshold of herd immunity, excessive precautions such as masks, social distancing, rigorous testing pre- as well as post-travel, and obsessively checking our phones for exposure can be done away with. The COVID-19 pandemic has immersed us in routines of excessive precautionary measures that it has become normalized for most of us. Thus, being vaccinated and covering society with a blanket of herd immunity removes the need for excessive precautions. lV. Bridging What “Is” and What “Ought” To Be Although contractualism presents a perspective that best suits a substantive approach to public health, it appears desirable only in theory. There exists a distinct reality outside of academia – politics, societal engagement, and governance reflect a different picture. This can be thought of as the gap between the is and the ought. We could envision and claim that a mandatory vaccination policy ought to be implemented in a certain manner, however, it might not be. In her paper, Realizing Bioethics’ Goals in Practice: Ten Ways “Is” Can Help “Ought,” Mildred Z. Solomon provides several reasons for this disconnect.[37] The general theme is the importance of empirical research – the need to find a balance between normative assumptions and empirical evidence – and how policymakers can, in turn, use such evidence to fine-tune the policy design process. Contractualism can prove especially useful to bridge the divide between is and ought. Theories of libertarian philosophy and utilitarianism rest on a design based on a normative approach that values liberty and utility and should guide the policymaking process. However, contractualism separates itself from these theories since constructing principles justifiable for all, and the idea of reasonable rejection must rely on empirical evidence. Engagement between various stakeholders and recognizing the plurality in values helps bridge the disconnect between the is and the ought. This is more important in the context of a mandatory vaccination policy since its requirement arises only if voluntary vaccination policies fail. Knowing why vaccination rates are low and how better to reach herd immunity will be important empirical evidence that can fine-tune the policy. In Re-enchanting Democracy as a Mode of Governance, Patsy Healey acknowledges that a struggle for political change often focuses on installing new policy designs.[38] Healey provides a list of qualities to keep in mind when designing a more people-centered policy initiative. The first quality is recognizing a shared, diverse, and conflictual political community where distributive justice is vital. The second is to foster is respect for different arguments, positions, and feelings— considering groups with conflicting values as adversaries but not enemies. The third quality is that of an ‘intelligent’ and multi-sided discussion of issues and reasoning ‘in public.’ The fourth is the fostering of respect for the role of the government while simultaneously recognizing the complexities of interactions. The fifth, and a key value in the context of the COVID-19 pandemic, is fostering respect for people who perform public services. Liberalism and utilitarianism create combative ethical discourse around those qualities, while contractualism could elevate shared public values. While liberal democracies arguably have the makings of those qualities, public engagement must be fostered at an intellectual level to promote cohesion. Another important aspect to consider is the question of what a framework should aim to answer. In Building an Ethical Framework for COVID-19 Resource Allocation: The How and Why, Angus Dawson addresses the goal of a framework, especially at the time of a pandemic.[39] He stresses the importance of context in constructing a framework and urges to engage with a diverse group of people. Value-laden normative approaches such as the libertarian and utilitarian frameworks provide less opportunity for different stakeholder claims. Dawson then argues that explicit discussions provide more clarity and help policy makers better understand the role of context in shaping a framework. Dawson asserts that a frame chosen sympathetically can help the public better appreciate the moral content involved in deliberation, whereas aiming for goals such as liberty and utility is a distraction from the workings of reality. In evaluating stakeholders, those with lower incomes often are unable to work remotely. They face a greater risk of COVID-19 due to workplace exposure as well as commutes and living conditions.[40] Although a mandatory vaccination policy has the clearly defined goal of achieving herd immunity, ensuring distributive and procedural justice should not be viewed as being mutually exclusive. CONCLUSION Societal change relies on justifiable goals, policies, and a multitude of viewpoints. As such, a contractualist approach best accommodates a multitude of views of what we owe each other. Moving forward, if pandemic-type circumstances do disseminate within the constructs of our society, public policy should further consider contractualist approaches as a healthy, inclusive means. - [1] Luyten, Jeroen. "Mutual Moral Obligations in the Prevention of Infectious Diseases." In Justice, Luck & Responsibility in Health Care, pp. 85-100. Springer, Dordrecht, 2013. [2] Council, Nuffield Bioethics. "Public Health: Ethical Issues." Nuffield Council on Bioethics (2007) [3] Dawson, Angus J. "Snakes and Ladders: State Interventions and the Place of Liberty in Public Health Policy." Journal of Medical Ethics 42, no. 8 (2016): 510-513. [4] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [5] Dawson, Angus. "Resetting the Parameters." Public Health Ethics (2011): 1-19. [6] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [7] Dawson, Angus J. "Snakes and Ladders: State Interventions and the Place of Liberty in Public Health Policy." Journal Of Medical Ethics 42, no. 8 (2016): 510-513. [8] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [9] Savulescu, Julian. "Good Reasons to Vaccinate: Mandatory or Payment for Risk?." Journal of Medical Ethics 47, no. 2 (2021): 78-85. [10] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [11] Dawson, Angus. "Resetting the Parameters." Public Health Ethics (2011): 1-19. [12] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [13] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [14] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [15] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [16] Luyten, Jeroen, and Yvonne Denier. "Explicit Cost-Effectiveness Thresholds in Health Care: A Kaleidoscope." Social Justice Research 32, no. 2 (2019): 155-171. [17] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [18] Luyten, Jeroen, Huseyin Naci, and Martin Knapp. "Economic Evaluation of Mental Health Interventions: An Introduction to Cost-Utility Analysis." Evidence-Based Mental Health 19, no. 2 (2016): 49-53. [19] Luyten, Jeroen, and Yvonne Denier. "Explicit Cost-Effectiveness Thresholds in Health Care: A Kaleidoscope." Social Justice Research 32, no. 2 (2019): 155-171. [20] (Luyten and Denier, 2019, p.10) [21] Luyten, Jeroen, Huseyin Naci, and Martin Knapp. "Economic Evaluation of Mental Health Interventions: An Introduction to Cost-Utility Analysis." Evidence-Based Mental Health 19, no. 2 (2016): 49-53. [22] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [23] Savulescu, et al. [24] Mill, John Stuart. "Utilitarianism, ed. George Sher." (2001). [25] Scanlon, Thomas M. "Précis of" What We Owe to Each Other"." (2003): 159-161. [26] Scanlon 2003 p.159) [27] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335. [28] Scanlon, Thomas M. "Précis of" What We Owe to Each Other"." (2003): 159-161. [29] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335. [30] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335. [31] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335. [32] Financial Times, 2021, “Covid is the Enemy, Not the Government” Sunil Jain April 26 Accessed 14 May 2021 https://www.financialexpress.com/opinion/covid-is-the-enemy-not-the-government/2240340/ [33] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [34] Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics 19, no. 4 (2005): 323-335. [35] Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics 19, no. 4 (2005): 323-335. [36] Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics 19, no. 4 (2005): 323-335. [37] Solomon, Mildred Z. "Realizing Bioethics' Goals in Practice: Ten Ways “Is” Can Help “Ought”." Hastings Center Report 35, no. 4 (2005): 40-47. [38] Healey, Patsy. "Re-enchanting Democracy as a Mode of Governance." In Connections, pp. 61-78. Routledge, 2017. [39] Dawson, Angus. "Building an Ethics Framework for COVID-19 Resource Allocation: The How and the Why." Journal of Bioethical Inquiry 17, no. 4 (2020): 757-760. [40] Schmidt, Harald, Lawrence O. Gostin, and Michelle A. Williams. "Is it Lawful and Ethical to Prioritize Racial Minorities for COVID-19 Vaccines?." Jama 324, no. 20 (2020): 2023-2024.

Introduction The scientific validity of climate change claims, how to intervene (if at all) in environmental, economic, political and social consequences of climate change, and the adaptation and mitigation needed with any given climate change scenario, are contested areas of public, policy and academic discourses. For marginalised populations, the climate discourses around adaptation, mitigation, vulnerability and resilience are of particular importance. This paper considers the silence around disabled people in these discourses. Marci Roth of the Spinal Cord Injury Association testified before Congress in regards to the Katrina disaster: [On August 29] Susan Daniels called me to enlist my help because her sister in-law, a quadriplegic woman in New Orleans, had been unsuccessfully trying to evacuate to the Superdome for two days. […] It was clear that this woman, Benilda Caixetta, was not being evacuated. I stayed on the phone with Benilda, for the most part of the day. […] She kept telling me she’d been calling for a ride to the Superdome since Saturday; but, despite promises, no one came. The very same paratransit system that people can’t rely on in good weather is what was being relied on in the evacuation. […] I was on the phone with Benilda when she told me, with panic in her voice “the water is rushing in.” And then her phone went dead. We learned five days later that she had been found in her apartment dead, floating next to her wheelchair. […] Benilda did not have to drown. (National Council on Disability, emphasis added) According to the Intergovernmental Panel on Climate Change (IPCC), adaptation is the “Adjustment in natural or human systems in response to actual or expected climatic stimuli or their effects, which moderates harm or exploits beneficial opportunities” (IPCC, Climate Change 2007). Adaptations can be anticipatory or reactive, and depending on their degree of spontaneity they can be autonomous or planned (IPCC, Fourth Assessment Report). Adaptations can be private or public (IPCC, Fourth Assessment Report), technological, behavioural, managerial and structural (National Research Council of Canada). Adaptation, in the context of human dimensions of global change, usually refers to a process, action or outcome in a system (household, community, group, sector, region, country) in order for that system to better cope with, manage or adjust to some changing condition, stress, hazard, risk or opportunity (Smit and Wandel). Adaptation can encompass national or regional strategies as well as practical steps taken at the community level or by individuals. According to Smit et al, a framework for systematically defining adaptations is based on three questions: (i) adaptation to what; (ii) who or what adapts; and (iii) how does adaptation occur? These are essential questions that have to be looked at from many angles including cultural and anthropological lenses as well as lenses of marginalised and highly vulnerable populations. Mitigation (to reduce or prevent changes in the climate system), vulnerability (the degree to which a system is susceptible to, and unable to cope with, the adverse effects of climate change), and resilience (the amount of change a system can undergo without changing state), are other important concepts within the climate change discourse. Non-climate stresses can increase vulnerability to climate change by reducing resilience and can also reduce adaptive capacity because of resource deployment to competing needs. Extending this to the context of disabled people, ableism (sentiment to expect certain abilities within humans) (Wolbring, “Is there an end to out-able?”) and disablism (the unwillingness to accommodate different needs) (Miller, Parker and Gillinson) are two concepts that will thus play themselves out in climate discourses. The “Summary for Policymakers” of the IPCC 2007 report, Climate Change 2007: Impacts, Adaptation and Vulnerability, states: “Poor communities can be especially vulnerable, in particular those concentrated in high-risk areas. They tend to have more limited adaptive capacities, and are more dependent on climate-sensitive resources such as local water and food supplies.” From this quote one can conclude that disabled people are particularly impacted, as the majority of disabled people live in poverty (Elwan). For instance, CARE International, a humanitarian organisation fighting global poverty, the UN Office for the Coordination of Humanitarian Affairs, and Maplecroft, a company that specialises in the calculation, analysis and visualisation of global risks, conclude: “The degree of vulnerability is determined by underlying natural, human, social, physical and financial factors and is a major reason why poor people—especially those in marginalised social groups like women, children, the elderly and people with disabilities—are most affected by disasters” (CARE International). The purpose of this paper is to expose the reader to (a) how disabled people are situated in the culture of the climate, adaptation, mitigation and resilience discourse; (b) how one would answer the three questions, (i) adaptation to what, (ii) who or what adapts, and (iii) how does adaptation occur (Smit et al), using a disabled people lens; and (c) what that reality of the involvement of disabled people within the climate change discourse might herald for other groups in the future. The paper contends that there is a pressing need for the climate discourse to be more inclusive and to develop a new social contract to modify existing dynamics of ableism and disablism so as to avoid the uneven distribution of evident burdens already linked to climate change. A Culture of Neglect: The Situation of Disabled People As climates changes, environmental events that are classified as natural disasters are expected to be more frequent. In the face of recent disaster responses, how effective have these efforts been as they relate to the needs and challenges faced by disabled people? Almost immediately after Hurricane Katrina devastated the Gulf Coast, the National Council on Disability (NCD) in the United States estimated that 155,000 people with disabilities lived in the three cities hardest hit by the hurricane (about 25 per cent of the cities’ populations). The NCD urged emergency managers and government officials to recognise that the need for basic necessities by hurricane survivors with disabilities was “compounded by chronic health conditions and functional impairments … [which include] people who are blind, people who are deaf, people who use wheelchairs, canes, walkers, crutches, people with service animals, and people with mental health needs.” The NCD estimated that a disproportionate number of fatalities were people with disabilities. They cited one statistic from the American Association of Retired Persons (AARP): “73 per cent of Hurricane Katrina-related deaths in New Orleans area were among persons age 60 and over, although they comprised only 15 per cent of the population in New Orleans.” As the NCD stated, “most of those individuals had medical conditions and functional or sensory disabilities that made them more vulnerable. Many more people with disabilities under the age of 60 died or were otherwise impacted by the hurricanes.” As these numbers are very likely linked to the impaired status of the elderly, it seems reasonable to assume similar numbers for non-elderly disabled people. Hurricane Katrina is but one example of how disabled people are neglected in a disaster (Hemingway and Priestley; Fjord and Manderson). Disabled people were also disproportionately impacted in other disasters, such as the 1995 Great Hanshin Earthquake in Japan (Nakamura) or the 2003 heatwave in France, where 63 per cent of heat-related deaths occurred in institutions, with a quarter of these in nursing homes (Holstein et al.). A review of 18 US heatwave response plans revealed that although people with mental or chronic illnesses and the homeless constitute a significant proportion of the victims in recent heatwaves, only one plan emphasised outreach to disabled persons, and only two addressed the shelter and water needs of the homeless (Ebi and Meehl; Bernhard and McGeehin). Presence of Disabled People in Climate Discourse Although climate change will disproportionately impact disabled people, despite the less than stellar record of disaster adaptation and mitigation efforts towards disabled people, and despite the fact that other social groups (such as women, children, ‘the poor’, indigenous people, farmers and displaced people) are mentioned in climate-related reports such as the IPCC reports and the Human Development Report 2007/2008, the same reports do not mention disabled people. Even worse, the majority of the material generated by, and physically set up for, discourses on climate, is inaccessible for many disabled people (Australian Human Rights Commission). For instance, the IPCC report, Climate Change 2007: Impacts, Adaptation and Vulnerability, contains Box 8.2: Gender and natural disasters, makes the following points: (a) “men and women are affected differently in all phases of a disaster, from exposure to risk and risk perception; to preparedness behaviour, warning communication and response; physical, psychological, social and economic impacts; emergency response; and ultimately to recovery and reconstruction”; (b) “natural disasters have been shown to result in increased domestic violence against, and post-traumatic stress disorders in, women”; and (c) “women make an important contribution to disaster reduction, often informally through participating in disaster management and acting as agents of social change. Their resilience and their networks are critical in household and community recovery.” The content of Box 8.2 acknowledges the existence of different perspectives and contributions to the climate discourse, and that it is beneficial to explore these differences. It seems reasonable to assume that differences in perspectives, contributions and impact may well also exist between people with and without disabilities, and that it may be likewise beneficial to explore these differences. Disabled people are differently affected in all phases of a disaster, from exposure to risk and risk perception; to preparedness behaviour, warning communication and response; physical, psychological, social and economic impacts; emergency response; and ultimately to recovery and reconstruction. Disabled people could also make an important contribution to disaster reduction, often informally through participating in disaster management and acting as agents of social change. Their resilience and their networks are critical in household and community recovery, important as distributors of relief efforts and in reconstruction design. The Bonn Declaration from the 2007 international conference, Disasters are always Inclusive: Persons with Disabilities in Humanitarian Emergency Situations, highlighted many problems disabled people are facing and gives recommendations for inclusive disaster preparedness planning, for inclusive response in acute emergency situations and immediate rehabilitation measures, and for inclusive post-disaster reconstruction and development measures. Many workshops were initiated by disabled people groups, such as Rehabilitation International. However, the disabled people disaster adaptation and mitigation discourse is not mainstreamed. Advocacy by people with disability for accessible transport and universal or “life-cycle” housing (among other things) shows how they can contribute significantly to more effective social systems and public facilities. These benefit everyone and help to shift public expectations towards accessible and flexible amenities and services—for example, emergency response and evacuation procedures are much easier for all if such facilities are universally accessible. Most suggestions by disabled people for a more integrative, accessible physical environment and societal attitude benefit everyone, and gain special importance with the ever-increasing proportion of elderly people in society. The IPCC Fourth Assessment Report is intended to be a balanced assessment of current knowledge on climate change mitigation. However, none of the 2007 IPCC reports mention disabled people. Does that mean that disabled people are not impacted by, or impact, climate change? Does no knowledge of adaptation, mitigation and adaptation capacity from a disabled people lens exist, or does the knowledge not reach the IPCC, or does the IPCC judge this knowledge as irrelevant? This culture of neglect and unbalanced assessment of knowledge evident in the IPCC reports was recognised before for rise of a ‘global’ climate discourse. For instance, a 2001 Canadian government document asked that research agendas be developed with the involvement of, among others, disabled people (Health Canada). The 2009 Nairobi Declaration on Africa’s response to climate change (paragraph 36) also asks for the involvement of disabled people (African Ministerial Conference on the Environment). However, so far nothing has trickled up to the international bodies, like the IPCC, or leading conferences such as the United Nations Climate Change Conference Copenhagen 2009. Where Will It End? In his essay, “We do not need climate change apartheid in adaptation”, in the Human Development Report 2007/2008, Archbishop Desmond Tutu suggests that we are drifting into a situation of global adaptation apartheid—that adaptation becomes a euphemism for social injustice on a global scale (United Nations Development Programme). He uses the term “adaptation apartheid” to highlight the inequality of support for adaptation capacity between high and low income countries: “Inequality in capacity to adapt to climate change is emerging as a potential driver of wider disparities in wealth, security and opportunities for human development”. I submit that “adaptation apartheid” also exists in regard to disabled people, with the invisibility of disabled people in the climate discourse being just one facet. The unwillingness to accommodate, to help the “other,” is nothing new for disabled people. The ableism that favours species-typical bodily functioning (Wolbring, “Is there an end to out-able?”; Wolbring, “Why NBIC?”) and disablism (Miller, Parker, and Gillinson)—the lack of accommodation enthusiasm for the needs of people with ‘below’ species-typical body abilities and the unwillingness to adapt to the needs of “others”—is a form of “adaptation apartheid,” of accommodation apartheid, of adaptation disablism that has been battled by disabled people for a long time. In a 2009 online survey of 2000 British people, 38 per cent believed that most people in British society see disabled people as a “drain on resources” (Scope). A majority of human geneticist concluded in a survey in 1999 that disabled people will never be given the support they need (Nippert and Wolff). Adaptation disablism is visible in the literature and studies around other disasters. The 1988 British Medical Association discussion document, Selection of casualties for treatment after nuclear attack, stated “casualties whose injuries were likely to lead to a permanent disability would receive lower priority than those expected to fully recover” (Sunday Morning Herald). Famine is seen to lead to increased infanticide, increased competitiveness and decreased collaboration (Participants of the Nuclear Winter: The Anthropology of Human Survival Session). Ableism and disablism notions experienced by disabled people can now be extended to include those challenges expected to arise from the need to adapt to climate change. It is reasonable to expect that ableism will prevail, expecting people to cope with certain forms of climate change, and that disablism will be extended, with the ones less affected being unwilling to accommodate the ones more affected beyond a certain point. This ableism/disablism will not only play itself out between high and low income countries, as Desmond Tutu described, but also within high income countries, as not every need will be accommodated. The disaster experience of disabled people is just one example. And there might be climate change consequences that one can only mitigate through high tech bodily adaptations that will not be available to many of the ones who are so far accommodated in high income countries. Desmond Tutu submits that adaptation apartheid might work for the fortunate ones in the short term, but will be destructive for them in the long term (United Nations Development Programme). Disability studies scholar Erik Leipoldt proposed that the disability perspective of interdependence is a practical guide from the margins for making new choices that may lead to a just and sustainable world—a concept that reduces the distance between each other and our environment (Leipoldt). This perspective rejects ableism and disablism as it plays itself out today, including adaptation apartheid. Planned adaptation involves four basic steps: information development and awareness-raising; planning and design; implementation; and monitoring and evaluation (Smit et al). Disabled people have important knowledge to contribute to these four basic steps that goes far beyond their community. Their understanding and acceptance of, for example, the concept of interdependence, is just one major contribution. Including the concept of interdependence within the set of tools that inform the four basic steps of adaptation and other facets of climate discourse has the potential to lead to a decrease of adaptation apartheid, and to increase the utility of the climate discourse for the global community as a whole. References African Ministerial Conference on the Environment. 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