Exposing Privacy Concerns in mHealth Data Sharing

Mobile health (mHealth) has become important in the field of healthcare information technology, as patients begin to use mobile devices to record their daily activities and vital signs. These devices can record personal health information even outside the hospital setting, while the patients are at home or at their workplace. However, the devices might record sensitive information that might not be relevant for medical purposes and in some cases may be misused. Patients need expressive privacy controls so that they can trade potential health benefits of the technology with the privacy risks. To provide such privacy controls, it is important to understand what patients feel are the benefits and risks associated with the technology and what controls they want over the information. We conducted focus groups to understand the privacy concerns that patients have when they use mHealth devices. We conducted a user study to understand how willing patients are to share their personal health information that was collected using an mHealth device. To the best of our knowledge, ours is the first study that explores users\u27 privacy concerns by giving them the opportunity to actually share the information collected about them using mHealth devices. We found that patients tend to share more information with third parties than the public and prefer to keep certain information from their family and friends. Finally, based on these discoveries, we propose some guidelines to developing defaults for sharing settings in mHealth systems

Privacy-preserving controls for sharing mHealth data

Mobile devices allow people to collect and share health and health-related information with recipients such as health providers, family and friends, employers and insurance companies, to obtain health, emotional or financial benefits. People may consider certain health information sensitive and prefer to disclose only what is necessary. In this dissertation, we present our findings about factors that affect people’s sharing behavior, describe scenarios in which people may wish to collect and share their personal health-related information with others, but may be hesitant to disclose the information if necessary controls are not available to protect their privacy, and propose frameworks to provide the desired privacy controls. We introduce the concept of close encounters that allow users to share data with other people who may have been in spatio-temporal proximity. We developed two smartphone-based systems that leverage stationary sensors and beacons to determine whether users are in spatio-temporal proximity. The first system, ENACT, allows patients diagnosed with a contagious airborne disease to alert others retrospectively about their possible exposure to airborne virus. The second system, SPICE, allows users to collect sensor information, retrospectively, from others with whom they shared a close encounter. We present design and implementation of the two systems, analyse their security and privacy guarantees, and evaluate the systems on various performance metrics. Finally, we evaluate how Bluetooth beacons and Wi-Fi access points can be used in support of these systems for close encounters, and present our experiences and findings from a deployment study on Dartmouth campus

Can I Access Your Data? Privacy Management in Mhealth

Mobile health (mHealth) has become important in the field of healthcare information technology, as patients begin to use mobile medical sensors to record their daily activities and vital signs. Since their medical data is collected by their sensors, the patients may wish to control data collection and distribution, so as to protect their data and share it only when the need arises. It must be possible for patients to grant or deny access to the data on the storage unit (mobile phones or personal health records (PHR)). Thus, an efficient framework is required for managing patient consent electronically, i.e.to allow patients to express their desires about what data to collect, what to store, and how to share. We describe several challenges posed by privacy management in mobile health

SPICE: Secure Proximity-Based Infrastructure for Close Encounters

We present a crowdsourcing system that extends the capabilities of location-based applications and allows users to connect and exchange information with users in spatial and temporal proximity. We define this incident of spatio-temporal proximity as a \em close encounter. Typically, location-based application users store their information on a server, and trust the server to provide access only to authorized users, not misuse the data or disclose their location history. Our system, called SPICE, addresses these privacy issues by leveraging Wi-Fi access points to connect users and encrypt their information before it is exchanged, so only users in close encounters have access to the information. We present the design of the system and describe the challenges in implementing the protocol in a real-world application

Exposing Privacy Concerns in Mhealth

We conducted several exploratory focus groups to understand what privacy concerns Patients might have with the collection, storage and sharing of their personal health information, when using mHealth devices. We found that Patients want control over their health information, and we noticed privacy trends that were particular to Patients in the same age group and with similar health experiences

Anxiously attached: Personality predictors of privacy attitudes, trust, and willingness to share information on the internet

Privacy concerns surrounding Internet and technology use are higher now than ever, yet, people continue to use the Internet and Internet-connected technologies to share information without coercion and often with recipients they do not have a relationship with. Our research addresses how people’s personality, particularly two personality dimensions (anxiety and avoidance) together known as attachment style, affects their self-reported willingness to share and their actual sharing behavior. We conducted two studies on Amazon’s Mechanical Turk (N=984). Study 1 surveyed 500 participants (193 women, 304 men, 3 transgender) aged 20-79 (Mdn = 35, SD = 11.65); and Study 2 surveyed 484 participants (223 women, 260 men, 1 transgender) aged 19-78 (Mdn = 35; SD = 11.69). Multiple regression analyses controlling for demographics and the personality factors neuroticism and extraversion show that anxiously attached individuals are more concerned (ßs = .24 and .33) than less anxiously attached individuals about their private data being disclosed, yet paradoxically, they report more trust in the security of digital communications (ßs = .21 and .34), making them more likely to share personal information on the Internet (ßs = .26 and .22). This research bears theoretical implications (e.g., understanding the psychology of sharing behavior), as well as practical ones (e.g., for tailoring existing privacy and sharing controls to individuals based on their personality characteristics)

The CUSSH programme: learning how to support cities' transformational change towards health and sustainability.

The Complex Urban Systems for Sustainability and Health (CUSSH) project is a global research programme on the complex systemic connections between urban development and health. Through transdisciplinary methods it will develop critical evidence on how to achieve the far-reaching transformation of cities needed to address vital environmental imperatives for planetary health in the 21st century. CUSSH's core components include: (i) a review of evidence on the effects of climate actions (both mitigation and adaptation) and factors influencing their implementation in urban settings; (ii) the development and application of methods for tracking the progress of cities towards sustainability and health goals; (iii) the development and application of models to assess the impact on population health, health inequalities, socio-economic development and environmental parameters of urban development strategies, in order to support policy decisions; (iv) iterative in-depth engagements with stakeholders in partner cities in low-, middle- and high-income settings, using systems-based participatory methods, to test and support the implementation of the transformative changes needed to meet local and global health and sustainability objectives; (v) a programme of public engagement and capacity building. Through these steps, the programme will provide transferable evidence on how to accelerate actions essential to achieving population-level health and global climate goals through, amongst others, changing cities' energy provision, transport infrastructure, green infrastructure, air quality, waste management and housing

Developing a programme theory for a transdisciplinary research collaboration: Complex Urban Systems for Sustainability and Health

Background: Environmental improvement is a priority for urban sustainability and health and achieving it requires transformative change in cities. An approach to achieving such change is to bring together researchers, decision-makers, and public groups in the creation of research and use of scientific evidence. Methods: This article describes the development of a programme theory for Complex Urban Systems for Sustainability and Health (CUSSH), a four-year Wellcome-funded research collaboration which aims to improve capacity to guide transformational health and environmental changes in cities. Results: Drawing on ideas about complex systems, programme evaluation, and transdisciplinary learning, we describe how the programme is understood to “work” in terms of its anticipated processes and resulting changes. The programme theory describes a chain of outputs that ultimately leads to improvement in city sustainability and health (described in an ‘action model’), and the kinds of changes that we expect CUSSH should lead to in people, processes, policies, practices, and research (described in a ‘change model’). Conclusions: Our paper adds to a growing body of research on the process of developing a comprehensive understanding of a transdisciplinary, multiagency, multi-context programme. The programme theory was developed collaboratively over two years. It involved a participatory process to ensure that a broad range of perspectives were included, to contribute to shared understanding across a multidisciplinary team. Examining our approach allowed an appreciation of the benefits and challenges of developing a programme theory for a complex, transdisciplinary research collaboration. Benefits included the development of teamworking and shared understanding and the use of programme theory in guiding evaluation. Challenges included changing membership within a large group, reaching agreement on what the theory would be ‘about’, and the inherent unpredictability of complex initiatives