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Cost Action 19121: GoodBrother The European Cooperation in Science and Technology (COST) is a funding organisation for the creation of research networks, called COST Actions (CA). These networks offer an open space for collaboration among scientists across Europe (and beyond) and thereby give impetus to research advancements and innovation. Many institutions around Europe participate actively in the CA19121 - Network on Privacy-Aware Audio- and Video-Based Applications for Active and Assisted Living, also called GoodBrother. Europe faces crucial challenges regarding health and social care due to the demographic change and current economic context. Active Assisted Living (AAL) technologies are a possible solution to support tackling them. AAL technologies aim at improving the health, quality of life, and wellbeing of older, impaired, and frail people. AAL systems use different sensors to monitor the environment and its dwellers. Cameras and microphones are being more frequently used for AAL. They monitor an environment and gather information, being the most straightforward and natural way of describing events, persons, objects, actions, and interactions. Recent advances have given these devices the ability to ‘see’ and ‘hear.’ However, their use can be seen as intrusive by some end-users such as assisted persons and professional and informal caregivers. GoodBrother aims to increase the awareness of the ethical, legal, and privacy issues associated with audio- and video-based monitoring and to propose privacy-aware working solutions for assisted living by creating an interdisciplinary community of researchers and industrial partners from different fields (computing, engineering, healthcare, law, sociology) and other stakeholders (users, policymakers, public services), stimulating new research and innovation. GoodBrother will offset the “Big Brother” sense of continuous monitoring by increasing user acceptance, exploiting these new solutions, and improving market reach. Working Group 1 on Social Responsibility: Ethical, legal, social, data protection and privacy issues Experts from diverse disciplines are analysing the ethical, legal, data protection and privacy issues associated with the use of cameras and microphones in private spaces, and how to manage multi-party privacy preferences. They also study the differences according to gender and cultural/societal background in the perception of these issues. This WG aims to establish the core requirements that AAL solutions must fulfil to consider ethico-legal issues and to integrate privacy by design and by default. Those requirements will set up the guidelines for the technical WGs (WG2, WG3 and WG4). The Workgroup goals are: Review the current European and international legislation and the ethical issues that underpin this on the use of audio- and video-based monitoring in private environments. Study the differences in the perception of privacy depending on the culture, society, gender and age of the users, and analyse the situations and conditions in later life, i.e. occurrence of a fall, which may affect that perception. Investigate the potential benefits and barriers of AAL technology adoption for people in need of care. Support the development of privacy-aware monitoring systems by a continuous exchange of knowledge with technological participants in the Action. Promote the consideration of ethical, legal, privacy and gender matters in the design of AAL solutions. Inform other WPs on the ethico-legal requirements in the design and development of AAL solutions. Objectives of this White Paper The objectives of this white paper are to: Define the relevant ethical aspects relating to AAL and distinguish these from the legal issues which are concerned with data protection and privacy as associated with the use of surveillance technology: cameras and microphones in private spaces, and how to manage multi-party privacy preferences. Review the current European and international legislation and examine the ethical issues that underpin these on the use of audio- and video-based monitoring in private environments. Study the differences in the perception of privacy depending on cultural understandings, social practices, gender, age, and health condition of the users, and analyse the situations through life, i.e. occurrence of a fall, which may affect that perception. Investigate the potential benefits and barriers of AAL technology adoption for people in need of care., This publication is based upon work from COST Action GoodBrother - Network on Privacy-Aware Audio- and Video-Based Applications for Active and Assisted Living (CA19121), supported by COST (European Cooperation in Science and Technology). COST (European Cooperation in Science and Technology) is a funding agency for research and innovation networks. Our Actions help connect research initiatives across Europe and enable scientists to grow their ideas by sharing them with their peers. This boosts their research, career and innovation. www.cost.eu

Working Group 1. Social responsibility: Ethical, legal, social, data protection and privacy issues Abstract Ambient assisted living (AAL) technologies are increasingly presented and sold as essential smart additions to daily life and home environments that will radically transform the healthcare and wellness markets of the future. An ethical approach and a thorough understanding of all ethics in surveillance/monitoring architectures are therefore pressing. AAL poses many ethical challenges raising questions that will affect immediate acceptance and long-term usage. Furthermore, ethical issues emerge from social inequalities and their potential exacerbation by AAL, accentuating the existing access gap between high-income countries (HIC) and low and middle-income countries (LMIC). Legal aspects mainly refer to the adherence to existing legal frameworks and cover issues related to product safety, data protection, cybersecurity, intellectual property, and access to data by public, private, and government bodies. Successful privacy-friendly AAL applications are needed, as the pressure to bring Internet of Things (IoT) devices and ones equipped with artificial intelligence (AI) quickly to market cannot overlook the fact that the environments in which AAL will operate are mostly private (e.g., the home). The social issues focus on the impact of AAL technologies before and after their adoption. Future AAL technologies need to consider all aspects of equality such as gender, race, age and social disadvantages and avoid increasing loneliness and isolation among, e.g. older and frail people. Finally, the current power asymmetries between the target and general populations should not be underestimated nor should the discrepant needs and motivations of the target group and those developing and deploying AAL systems. Whilst AAL technologies provide promising solutions for the health and social care challenges, they are not exempt from ethical, legal and social issues (ELSI). A set of ELSI guidelines is needed to integrate these factors at the research and development stage. Keywords Ethical principles, Privacy, Assistive Living Technologies, Privacy by Design, General Data Protection Regulation.

Introduction The user experience of persons with dementia and their primary caregivers with locating systems is not firmly established. Methods Eighteen dyads used a prototype locating system during 4 weeks. Primary outcome measures were ratings of usability, and product functions and features. Secondary outcome measures were caregiver burden, perceived self-efficacy, frequency of use, and willingness to purchase the prototype. Changes in scores between baseline (T1) and end of testing period (T2) were compared by performing independent and dependent samples correlations and descriptive statistics. Results Seventeen dyads made up the final sample. Ratings of usability and product functions and features were fair, but usability ratings were significantly reduced after 4 weeks. Although the prototype was used infrequently by majority of the participants, most caregivers would be willing to purchase the prototype, with men more willing than women. No significant change in technological willingness, caregiver burden, or perceived self-efficacy was found between T1 and T2. Perceived self-efficacy significantly negatively correlated with willingness to purchase the prototype after 4 weeks. Discussion Results highlight the importance of including end users in the research and development phase of locating systems to improve the user experience in home dementia care. Necessary indications for further research are carrying out randomized controlled trials with larger, more representative samples and developing innovative software and hardware solutions., Highlights • A prototype locating system was rated fairly overall but used infrequently. • Usability ratings significantly decreased after 4 weeks of testing. • Willingness to purchase the prototype was high, with men more willing than women. • Perceived self-efficacy negatively correlated with willingness to purchase. • Recommendations to improve user experience are provided.

Objective To identify implementation lessons from the United Kingdom Delivering Assisted Living Lifestyles at Scale (dallas) program—a large-scale, national technology program that aims to deliver a broad range of digital services and products to the public to promote health and well-being.Materials and Methods Prospective, longitudinal qualitative research study investigating implementation processes. Qualitative data collected includes semi-structured e-Health Implementation Toolkit–led interviews at baseline/mid-point ( n = 38), quarterly evaluation, quarterly technical and barrier and solutions reports, observational logs, quarterly evaluation alignment interviews with project leads, observational data collected during meetings, and ethnographic data from dallas events ( n > 200 distinct pieces of qualitative data). Data analysis was guided by Normalization Process Theory, a sociological theory that aids conceptualization of implementation issues in complex healthcare settings.Results Five key challenges were identified: 1) The challenge of establishing and maintaining large heterogeneous, multi-agency partnerships to deliver new models of healthcare; 2) The need for resilience in the face of barriers and set-backs including the backdrop of continually changing external environments; 3) The inherent tension between embracing innovative co-design and achieving delivery at pace and at scale ; 4) The effects of branding and marketing issues in consumer healthcare settings; and 5) The challenge of interoperability and information governance, when commercial proprietary models are dominant.Conclusions The magnitude and ambition of the dallas program provides a unique opportunity to investigate the macro level implementation challenges faced when designing and delivering digital health and wellness services at scale. Flexibility, adaptability, and resilience are key implementation facilitators when shifting to new digitally enabled models of care.