The Ethical Implications of Personal Health Monitoring

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these are discussed. The system / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient’s identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations

Big Data and the Internet of Things

Advances in sensing and computing capabilities are making it possible to embed increasing computing power in small devices. This has enabled the sensing devices not just to passively capture data at very high resolution but also to take sophisticated actions in response. Combined with advances in communication, this is resulting in an ecosystem of highly interconnected devices referred to as the Internet of Things - IoT. In conjunction, the advances in machine learning have allowed building models on this ever increasing amounts of data. Consequently, devices all the way from heavy assets such as aircraft engines to wearables such as health monitors can all now not only generate massive amounts of data but can draw back on aggregate analytics to "improve" their performance over time. Big data analytics has been identified as a key enabler for the IoT. In this chapter, we discuss various avenues of the IoT where big data analytics either is already making a significant impact or is on the cusp of doing so. We also discuss social implications and areas of concern.Comment: 33 pages. draft of upcoming book chapter in Japkowicz and Stefanowski (eds.) Big Data Analysis: New algorithms for a new society, Springer Series on Studies in Big Data, to appea

Designing the Health-related Internet of Things: Ethical Principles and Guidelines

The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols

Addiction Recovery Support: Connecting Primary Care Providers and Community Resources

Addiction to drugs and alcohol is a pervasive problem throughout Vermont and the U.S., and only a fraction of those needing help receive it. The vast majority of admissions to substance abuse treatment programs do not come from healthcare providers, who report a lack of preparedness in managing addiction screening and referrals. Recognizing that Family Medicine Providers are likely to be caring for many patients struggling with substance abuse, this project aims to improve provider familiarity with local resources. In particular, this project focuses on promoting long-term retention in self-help group programs, as these have been demonstrated to be the most approachable form of help for many presenting in the primary care setting.https://scholarworks.uvm.edu/fmclerk/1288/thumbnail.jp

Women’s Experiences with Prenatal Care: A Mixed-Methods Study Exploring the Influence of the Social Determinants of Health

Background & Purpose: Racial and ethnic disparities pervade birth outcomes in the United States and the state of Connecticut. While Connecticut’s infant mortality rate is less than the national average, rates for the state’s Black/African American and Hispanic/Latino communities exceed it. This study explored how prenatal care in Connecticut may be enhanced to address these disparities. Methods: In spring 2013, seven focus groups and two semi-structured interviews were conducted (n=47). Participants also self-administered brief surveys. Recruited by local service providers, participants were 18 or older, pregnant and/or in the first year post-partum at the time. Most self-identified as non-white. Results: Even when care was perceived as strong quality, participants perceived a lack of patient-centeredness. Participants knew the importance of prenatal care and actively prioritized it even when experiencing challenges accessing healthcare services or barriers to broader conditions needed to be healthy. Participants also reported experiencing discrimination in healthcare. Conclusions & Implications: The women esteemed providers’ clinical advice, but felt unheard in their prenatal care experiences and faced structural challenges which may be addressed by changing institutional policies and procedures

Delivering elder-care environments utilizing TV-channel based mechanisms

In this paper, we present a smart environment for elderly. What makes the development of such system challenging is that the concept of smartness for elderly brings to the extreme the idea of invisibility of the technology. In our experience, elders are well-disposed to new technologies, provided that those will not require significant changes - namely, they are invisible - to their habits. Starting from this consideration, 200 caregivers responses were collected by questionnaire, so as to better understand elders' needs and habits. A system was subsequently developed allowing elders to access a number of "modern web services" as standard TV channels: at channel 43 there is the health status, at channel 45 the photos of the family, at 46 the agenda of the week, just to mention few of the available services. The content of such services is automatically generated by the smart devices in the environment and is managed by the caregivers (e.g., family members) by simple web apps. Fourteen families were asked to install the system in their house. The results of these experiments confirm that the proposed system is considered effective and user-friendly by elders