Kalpana Shankar

DigiSwitch: A Device to Allow Older Adults to Monitor and Direct the Collection and Transmission of Health Information Collected at Home

Home monitoring represents an appealing alternative for older adults considering out-of-home long term care and an avenue for informal caregivers and health care providers to gain decision-critical information about an older adults’ health and well-being. However, privacy concerns about having 24/7 monitoring, especially video monitoring, in the home environment have been cited as a major barrier in the design of home monitoring systems. In this paper we describe the design and evaluation of “DigiSwitch”, a medical system designed to allow older adults to view information as it is collected about them and temporarily cease transmission of data for privacy reasons. Results from a series of iterative user studies suggest that control over the transmission of monitoring data from the home is helpful for maintaining user privacy. The studies demonstrate that older adults are able to use the DigiSwitch system to monitor and direct the collection and transmission of health information in their homes, providing these participants with a way to simultaneously maintain privacy and benefit from home monitoring technology.

Wind, Water, and Wi-Fi: New Trends in Community Informatics and Disaster Management

In emergencies, information sharing among and between officials, volunteers, and citizens is essential for effective recovery and management. Recently, volunteers and others have been using community technology centers, community wireless networks, and end-user social technologies such as blogs and Wikis to prepare for emergencies and communicate and coordinate response when they happen. This article argues that there is a need for a research agenda that combines our knowledge of community informatics with the principles of disaster management to understand how social networks form and mobilize in disasters and how information and communication technologies should be designed and deployed to engage, inform, and mobilize those volunteer and citizen networks.

Scientific Data Collections and Distributed Collective Practice

As the basic sciences become increasingly information-intensive, the management and use of research data presents new challenges in the collective activities that constitute scholarly and scientific communication. This also presents new opportunities for understanding the role of informatics in scientific work practices, and for designing new kinds tools and resources needed to support them. These issues of data management, scientific communication and collective activity are brought together at once in scientific data collections (SDCs). What can the development and use of shared SDCs tell us about collective activity, dynamic infrastructures, and distributed scientific work? Using examples drawn from a nascent neuroscience data collection, we examine some unique features of SDCs to illustrate that they do more than act as infrastructures for scientific research. Instead, we argue that they are themselves instantiations of Distributed Collective Practice (DCP), and as such illustrate concepts of transition, emergence, and interdependency that may not be so apparent in other kinds of DCPs. We propose that research into SDCs can yield new insights into institutional arrangements, policymaking, and authority structures in other very large-scale socio-technical networks.

Ambiguity and legitimate peripheral participation in the creation of scientific documents

Purpose – The purpose of this paper is to report on a qualitative study of data management and recordkeeping in the research sciences and their roles in information creation and professional identity formation.Design/methodology/approach – The study uses ethnographic fieldwork data in an academic laboratory to examine documentation practices as a part of the trajectory of scientific professionalization. The article examines ethnographic fieldnotes and medical records as cognate areas that provide insight into the topic.Findings – The paper argues that scientific recordkeeping is essential for learning to balance professional standards and personal knowledge, establishing comfort with ambiguity, and can be a process marked by ritual, anxiety, and affect. The article does this by discussing the creation of record from data, tacit knowledge as part of that process, and the process of legitimate peripheral participation (LPP).Research limitations/implications – The qualitative nature of the study suggests the...

Making Sense of Mobile- and Web-Based Wellness Information Technology: Cross-Generational Study

Background A recent trend in personal health and wellness management is the development of computerized applications or information and communication technologies (ICTs) that support behavioral change, aid the management of chronic conditions, or help an individual manage their wellness and engage in a healthier lifestyle. Objective To understand how individuals across 3 generations (young, middle-aged, and older) think about the design and use of collaborative health and wellness management technologies and what roles these could take in their lives. Methods Face-to-face semistructured interviews, paper prototype systems, and video skits were used to assess how individuals from 3 age cohorts (young: 18-25 years; middle-aged: 35-50 years; and older: ≥65 years) conceptualize the role that health and wellness computing could take in their lives. Results A total of 21 participants in the 3 age cohorts took part (young: n=7; middle-aged: n=7; and older: n=7). Young adults expected to be able to actively manage the presentation of their health-related information. Middle-aged adults had more nuanced expectations that reflect their engagement with work and other life activities. Older adults questioned the sharing of health information with a larger audience, although they saw the value in 1-way sharing between family members or providing aggregated information. Conclusions Our findings inform our suggestions for improving the design of future collaborative health and wellness applications that target specific age groups. We recommend that collaborative ICT health applications targeting young adults should integrate with existing social networking sites, whereas those targeting middle-aged and older adults should support small social networks that rely on intimate personal relationships. Systems that target middle-aged adults should support episodic needs, such as time-sensitive, perhaps intermittent, goal setting. They should also have a low barrier to entry, allowing individuals who do not normally engage with the Internet to participate with the application for the specific purposes of health engagement. Collaborative ICT health applications targeting older adults should allow discreet 1-way sharing, and also support sharing of information in aggregate with others’ data. These systems should also provide mechanisms to preselect recipients of different kinds of data, or to easily direct specific information to individuals in real time.

Pervasive computing and an aging populace: Methodological challenges for understanding privacy implications

Purpose – The purpose of this paper is to describe some of the methodological challenges of investigating privacy and ubiquitous computing in the home, particularly among the healthy elderly.Design/methodology/approach – The paper is based on focus groups with 60 senior citizens either living independently or in an assisted living facility. Prototypes of home‐based ubiquitous computing devices were created and deployed in a home‐like living lab setting; elders were brought to the lab to interact with the prototypes, then brought together in focus groups to discuss their insights and concerns.Findings – Initial analyses suggest that extant metaphors of privacy may be inadequate for understanding pervasive computing in the home. Concepts of data, affective concerns, and the creation of appropriate prototypes for eliciting privacy are considered. Considerations for future studies of the elderly and privacy are made.Research limitations/implications – The homogeneity of the study population in terms of socioe...

Privacy concerns in assisted living technologies

The challenges of an aging population require the adoption of in-home and medical technologies to complement the traditional caregiver model. Adoption of such technologies is, however, impinged by privacy concerns. This study investigates a four-dimensional framework that explains the trade-offs between functionality and privacy as constructed by older adults. The four dimensions constitute perceived utility, data granularity, data recipient, and activity sensitivity. We conducted a survey-based study to empirically examine the applicability and robustness of this framework. Our results have implications for the adoption of a wide range of privacy-enhancing technologies. By focusing on the intersection of an under-studied group (nontechnical older adults) and sensitive data (medical and at home), this work has the potential to enable privacy enhancing technologies (PETs) that might be widely adopted.

Exploring early evaluation techniques of ambient health promoting devices in home environments of senior citizens living independently

In this paper, our goal is to explore different early evaluation techniques and their effectiveness for designing better ambient health- promoting devices for the elderly. One cannot assess the complete impact of these devices without full implementation of the device. However, through early evaluation, we present a set of considerations that can help gain meaningful insights to refine and improve upon the existing conceptual models of health monitoring ambient devices.

What are we talking about when we talk about sustainability of digital archives, repositories and libraries?

This paper reports on how LIS authors depict the concept of sustainability of digital archives, repositories and libraries in English language texts from 2000‐ 2015 indexed in three major LIS databases. Our results show that sustainability is not as popular a topic as one might expect. Results show that most authors discuss sustainability at a superficial level rather than in‐depth. Sustainability is a multi‐faceted concept, and we explore the prevalence of nine codes, representing different facets of sustainability, in the texts. We found most authors discussed sustainability in terms of technology, management, relationships or revenue. Fewer described assessment, disaster planning or policy facets. We also describe the range and variation in subthemes we encountered within each code. We conclude with suggestions for advancing conversation about organizational sustainability in the LIS literature.

Designing sustainable data archives: comparing sustainability frameworks

This theory review paper argues that in order to ensure the longevity of data, we need a better understanding of the sustainability of institutions that steward data. The paper considers what sustainability means in relation to data archives. It compares five frameworks that inform the concept of sustainability in order to develop a more complex understanding of the concept of sustainability. The resulting conceptualizations of sustainability can aid data archive stakeholders, designers and analysts in making decisions about how to develop “sustainable” data institutions.