Interdisciplinary perspectives on privacy awareness in lifelogging technology development

Population aging resulting from demographic changes requires some challenging decisions and necessary steps to be taken by different stakeholders to manage current and future demand for assistance and support. The consequences of population aging can be mitigated to some extent by assisting technologies that can support the autonomous living of older individuals and persons in need of care in their private environments as long as possible. A variety of technical solutions are already available on the market, but privacy protection is a serious, often neglected, issue when using such (assisting) technology. Thus, privacy needs to be thoroughly taken under consideration in this context. In a three-year project PAAL (‘Privacy-Aware and Acceptable Lifelogging Services for Older and Frail People’), researchers from different disciplines, such as law, rehabilitation, human-computer interaction, and computer science, investigated the phenomenon of privacy when using assistive lifelogging technologies. In concrete terms, the concept of Privacy by Design was realized using two exemplary lifelogging applications in private and professional environments. A user-centered empirical approach was applied to the lifelogging technologies, investigating the perceptions and attitudes of (older) users with different health-related and biographical profiles. The knowledge gained through the interdisciplinary collaboration can improve the implementation and optimization of assistive applications. In this paper, partners of the PAAL project present insights gained from their cross-national, interdisciplinary work regarding privacy-aware and acceptable lifelogging technologies.Open Access funding enabled and organized by Projekt DEAL. This work is part of the PAAL-project (“Privacy-Aware and Acceptable Lifelogging services for older and frail people”). The support of the Joint Programme Initiative “More Years, Better Lives” (award number: PAAL_JTC2017), the German Federal Ministry of Education and Research (grant no: 16SV7955), the Swedish Research Council for Health, Working Life, and Welfare (grant no: 2017–02302), the Spanish Agencia Estatal de Investigacion (PCIN-2017-114), the Italian Ministero dell’Istruzione dell’Universitá e della Ricerca, (CUP: I36G17000380001), and the Canadian Institutes of Health Research is gratefully acknowledged

Intelligent technologies for the aging brain: opportunities and challenges

Intelligent computing is rapidly reshaping healthcare. In light of the global burden of population aging and neurological disorders, dementia and elderly care are among the healthcare sectors that are most likely to benefit from this technological revolution. Trends in artificial intelligence, robotics, ubiquitous computing, neurotechnology and other branches of biomedical engineering are progressively enabling novel opportunities for technology-enhanced care. These Intelligent Assistive Technologies (IATs) open the prospects of supporting older adults with neurocognitive disabilities, maintain their independence, reduce the burden on caregivers and delay the need for long-term care (1, 2). While technology develops fast, yet little knowledge is available to patients and health professionals about the current availability, applicability, and capability of existing IATs. This thesis proposes a state-of-the-art analysis of IATs in dementia and elderly care. Our findings indicate that advances in intelligent technology are resulting in a rapidly expanding number and variety of assistive solutions for older adults and people with neurocognitive disabilities. However, our analysis identifies a number of challenges that negatively affect the optimal deployment and uptake of IATs among target users and care institutions. These include design issues, sub-optimal approaches to product development, translational barriers between lab and clinics, lack of adequate validation and implementation, as well as data security and cyber-risk weaknesses. Additionally, in virtue of their technological novelty, intelligent technologies raise a number of Ethical, Legal and Social Implications (ELSI). Therefore, a significant portion of this thesis is devoted to providing an early ethical Technology Assessment (eTA) of intelligent technology, hence contributing to preparing the terrain for its safe and ethically responsible adoption. This assessment is primarily focused on intelligent technologies at the human-machine interface, as these applications enable an unprecedented exposure of the intimate dimension of individuals to the digital infosphere. Issues of privacy, integrity, equality, and dual-use were addressed at the level of stakeholder analysis, normative ethics and human-rights law. Finally, this thesis is aimed at providing evidence-based recommendations for guiding participatory and responsible development in intelligent technology, and delineating governance strategies that maximize the clinical benefits of IATs for the aging world, while minimizing unintended risks

An evaluation of healthcare professionals’ decision-making in the care of frail older people at end of life

There is a global demographic shift toward an ageing population, and in the UK the proportion those aged 65 and over continues to rise (ONS 2017). As people age, they are progressively more likely to live with complex co-morbidities, disability and frailty (Kings Fund 2014). Frailty has been acknowledged as a key priority NHS England with the need to provide timely, proactive support for older people as they continue to age (NHS England 2014;2017). Therefore this evaluation aims to evaluate the influence of policy and practice on the decision-making of professionals to inform service delivery. This evaluation utilised a case narrative approach to explore professional decision-making that underpinned the care of three deceased frail older people. Data was collected in two phases, a comparative review of the clinical documentation followed by narrative interviews of professionals. Ten professionals from nursing, occupational therapy and physiotherapy participated across 3 cases. Data analysis was iterative, informed by the narrative reality conceptual framework (Connelly and Clandinin 2000). Two grand narratives emerged, these were the clinical story of care of a frail older person reaching end-of-life and professional’s stories of decision-making. Grand narrative one set out the clinical story of care, providing a contextual account of frailty and end-of-life from a professional perspective. Grand narrative two explored the professional’s stories in supporting a frail older person reaching end-of-life. The practice implications centred on the process of care for frail older people and how medicalisation of ageing and death resulted in protocol-driven, asynchronous technical care. The aim of care being to diagnose and treat illness and functional decline within a deficit-based decision-making approach, whereby independence and risk management were the foci of decision-making. The paradigm of active ageing has been incorporated into professional decision-making leading to an absence of end-of-life care needs being considered within practice. The theoretical implications indicate that a transitional understanding of frailty may offer a critical lens through which to recognises the individual needs of older people. The evaluation recommendations focus on developing the competencies of professional decision-making by utilising recognised tools to support the identification and management of frailty, guiding professionals to consider the holistic needs of the older person within the context of everyday life including end-of-life-care. To achieve this, there needs to be investment in developing the leadership of all professional groups especially AHP in contributing to Frailty pathways, thus ensuring care is targeted at the three core transitional phases of rehabilitation, habilitation and palliation. In doing so the divergence between policy and practice can be challenged, thus incorporating end-of-life care explicitly into NHS organisational goals for older people

Proceedings of the 2012 Workshop on Ambient Intelligence Infrastructures (WAmIi)

This is a technical report including the papers presented at the Workshop on Ambient Intelligence Infrastructures (WAmIi) that took place in conjunction with the International Joint Conference on Ambient Intelligence (AmI) in Pisa, Italy on November 13, 2012. The motivation for organizing the workshop was the wish to learn from past experience on Ambient Intelligence systems, and in particular, on the lessons learned on the system architecture of such systems. A significant number of European projects and other research have been performed, often with the goal of developing AmI technology to showcase AmI scenarios. We believe that for AmI to become further successfully accepted the system architecture is essential

Proceedings of the 2012 Workshop on Ambient Intelligence Infrastructures (WAmIi)

This is a technical report including the papers presented at the Workshop on Ambient Intelligence Infrastructures (WAmIi) that took place in conjunction with the International Joint Conference on Ambient Intelligence (AmI) in Pisa, Italy on November 13, 2012. The motivation for organizing the workshop was the wish to learn from past experience on Ambient Intelligence systems, and in particular, on the lessons learned on the system architecture of such systems. A significant number of European projects and other research have been performed, often with the goal of developing AmI technology to showcase AmI scenarios. We believe that for AmI to become further successfully accepted the system architecture is essential

Ethical Framework for Harnessing the Power of AI in Healthcare and Beyond

In the past decade, the deployment of deep learning (Artificial Intelligence (AI)) methods has become pervasive across a spectrum of real-world applications, often in safety-critical contexts. This comprehensive research article rigorously investigates the ethical dimensions intricately linked to the rapid evolution of AI technologies, with a particular focus on the healthcare domain. Delving deeply, it explores a multitude of facets including transparency, adept data management, human oversight, educational imperatives, and international collaboration within the realm of AI advancement. Central to this article is the proposition of a conscientious AI framework, meticulously crafted to accentuate values of transparency, equity, answerability, and a human-centric orientation. The second contribution of the article is the in-depth and thorough discussion of the limitations inherent to AI systems. It astutely identifies potential biases and the intricate challenges of navigating multifaceted contexts. Lastly, the article unequivocally accentuates the pressing need for globally standardized AI ethics principles and frameworks. Simultaneously, it aptly illustrates the adaptability of the ethical framework proposed herein, positioned skillfully to surmount emergent challenges

Tailoring care for older adults:understanding older adults' goals and preferences

The increasing amount of older adults with multi-morbidity and increasing care complexity demands a fundamental change in care delivery. It entails a shift from a disease-oriented approach to a tailored approach for frail older adults. Nowadays, proactive integrated person-centred care is strived for in order to face these aging population challenges and achieve tailored care. Despite all efforts, the effects of these care reforms are unclear and the reasons for their hampered implementation are not fully understood. Therefore, the realist evaluation approach can be of help, which focusses not only on the outcomes of new care initiatives, but also on the mechanisms and context in which these reforms take place. We used this approach to study the role of goal setting within proactive care services for frail older adults. We evaluated three different perspectives in this regard: the extent to which goal setting programs have improved outcomes for older adults, the mechanisms of goal setting within proactive care, and the context of older adult’s preferences inferencing these outcomes and mechanisms. Multiple resources were combined (medical records, audio-taped assessments, older adults’ self-reported preferences and wellbeing status, and semi-structured interviews with older adults and care professionals), which led to the following conclusion: Tailored care for older adults experiencing frailty and multi-morbidity by means of goal setting and involvement adapted to their engagement preferences, supports their need for holistic care, but can only have an impact on individual goals when embedded within a durable contact with professionals who actively align care with each other. Of course, this demands for future research, as well as commitment of policy makers and care professionals

The Experiences Of Occupational Therapists Working In Oncology Care and the Implications of the Referral Process

Purpose: The purpose of this independent study was to explore the current role of occupational therapists working in oncology care and to understand the implications of the referral process for this specific population. Methodology: A phenomenological research design, derived from Giorgi and Giorgi (2008), was used to implement this study. The researchers interviewed 6 occupational therapists, from a variety of settings, in the Midwest region using a semi-structured interview style. The interviews were recorded, transcribed, and broken down into key constituents (Giorgi & Giorgi, 2008). Results: The subsequent results from the 6 interviews were developed from 11 key constituents that related back to current occupational therapists’ experiences working with oncology patients. From the key constituents, the three elements that came forward were (1) Occupational therapists experiences within the process of working with oncology patients, (2) the impact of the referral system on the OT process, and (3) therapist’s reflections on how the Oncology Occupational Performance Screening Tool (OOPST) can shift occupational therapy’s overall experience within the healthcare system. These three elements of the general structure have important implications for the future of occupational therapy in oncology care. Conclusions: In order to increase referrals for occupational therapy services in oncology care, occupational therapists have to advocate their skill set to the medical team, the patients, and other occupational therapists. Current occupational therapists are already implementing evidence-based practice that fit the need of patients in oncology care, and it’s time to apply this knowledge to a population who would benefit so deeply from occupational therapy’s unique skill set