Katherine D. Seelman

Disability, Age, and Informational Privacy Attitudes in Quality of Life Technology Applications: Results from a National Web Survey

Technology aimed at enhancing function and enabling independent living among older and disabled adults is a growing field of research. Privacy concerns are a potential barrier to adoption of such technology. Using data from a national Web survey (n=1,518), we focus on perceived acceptability of sharing information about toileting, taking medications, moving about the home, cognitive ability, driving behavior, and vital signs with five targets: family, healthcare providers, insurance companies, researchers, and government. We also examine acceptability of recording the behaviors using three methods: video with sound, video without sound, and sensors. Results show that sharing or recording information about toileting behavior; sharing information with the government and insurance companies; and recording the information using video were least acceptable. Respondents who reported current disability were significantly more accepting of sharing and recording of information than nondisabled adults, controlling for demographic variables, general technology attitudes, and assistive device use. Results for age were less consistent, although older respondents tended to be more accepting than younger respondents. The study provides empirical evidence from a large national sample of the implicit trade-offs between privacy and the potential for improved health among older and disabled adults in quality of life technology applications.

A Comparison of Federal Laws Toward Disabled and Racial/Ethnic Groups in the USA

ABSTRACT This paper asks if federal legislation for disabled people differs from that for racial/ethnic groups in the United States. It compares the history and content of federal legislation which affects each group, and it compares the ways existing laws for each group handle the issues of employment discrimination, integration in education, access, and equal protection under the law. It shows that there are clear differences in content and coverage for each group in types of discrimination permitted under existing federal laws.

Introduction to the Special Issue on Information Quality: The Challenges and Opportunities in Healthcare Systems and Services

The challenges facing the information quality community within a medical context are immense as the tools which collect, process, and use the healthcare-related data are in a constant state of flux. If one considers the drivers and challenges surrounding the technological (e.g., continuous advancements in digital utilization), the commercial (a hodgepodge of individual providers), and finally information and communication standards (with a lack of or maturity of), then the realization of an effective quality-based information system for healthcare seems very far away indeed. For example, it was reported that between 44,000 and 98,000 deaths occur annually as a consequence of medical errors within American hospitals alone [Kohn et al. 1999]. “A window of opportunity remains for health care to follow other high risk industries in establishing basic safety” [Stelfox et al. 2006] to help improve overall patient care. However, if one takes into account the unique operational practices within each healthcare institute and the archetypal resistance to change in adopting new and emerging medical devices and associated practices [Roback et al. 2007], then the challenge for all parties concerned is enormous. Many will agree with Grossman’s recent statement [Grossman 2008]: “The struggle to improve the quality of care is, at best, at a standstill”. Over the years, advancements have been made on a number of fronts, for example, through wireless sensor networks [Baker et al. 2007], telehome care [Johnston et al. 2000], and clinical decision-support systems [Johnston et al. 1994], all stimulated by the digital revolution with the goal of creating better healthcare services [Topol 2012]. Four high-quality articles are presented in this ACM JDIQ special issue on Information Quality: the Challenges and Opportunities in Healthcare Systems and Services. Each of the articles deals with various types of information quality across a number of areas. Article 1 focuses on primary healthcare research and its associated epidemiological databases in Ireland. The overall steps outlined in this article provide a practical template for the implementation of such databases in the future. Article 2 deals with data quality issues across databases which store drug-related information. The proposed solution aims to improve the data quality of relational drug databases and uses an ontology-based data access approach with the representation of conditional dependencies via an epistemic query language. Article 3 examines ambient assistant living and the role of contextual knowledge in supporting the data quality validation process. Article 4 presents a context-sensitive quality data management system for pervasive computing in healthcare. It looks at the important data quality aspects associated with pervasive healthcare devices with a primary focus on patient body area networks. This article is based on the PhD work of Dr. John O’Donoghue, Health Information Systems Research Centre, Ireland, which received the 2008 Ballou/Pazer DQ/IQ research award, which recognizes a PhD dissertation that demonstrates a significant contribution to the field of Information Quality (IQ).

Aging with a Disability: Views from the National Institute on Disability and Rehabilitation Research

As I move toward the completion of my term as Director of the National Institute on Disability and Rehabilitation Research (NIDRR), I see many examples of renewal in our field. For example, disability studies and rehabilitation science are emerging new areas of academic specialization, and we will all be involved in shaping the future of these endeavors. The field is recapturing its identity and relevance locally and internationally. Also, I see a considerable number of challenges that range from acute care in medical rehabilitation to universal design in engineering to overall technology policy. I see a challenge in moving research to practice, a challenge in funding, a challenge in service delivery locations, and a challenge in defining the role of the professional in order to build capacity for the future. I believe that the research field ignores practice at its own peril, including practice in older fields such as vocational rehabilitation and in newer fields such as cognitive science and access engineering. Practice must be determined by todays needs and those we foresee for tomorrow. For the NIDRR family, the Long-Range Plan provides a beacon to direct us into the new millennium.

Technology transfer of hearing aids to low and middle income countries: policy and market factors

Abstract Purpose: The competitive market advantages of industry and the balancing force of international governmental organizations (IGOs) are examined to identify market and policy in support of sustainable technology transfer of hearing aids to low and middle income countries. A second purpose is to examine the usefulness of findings for other assistive technologies (AT). Methods: Searches of electronic databases, IGO documents, industry reports and journals were supplemented by informal discussions with industry and IGO staff and audiologists. The value chain is used to examine the competitive advantage of industry and the balancing tools of certain IGOs. Results: Both industry and IGOs engage in intellectual property (IP) and competition activities and are active in each segment of the hearing aid value chain. Their market and policy objectives and strategies are different. Conclusions: IGOs serve as balancing forces for the competitive advantages of industry. The hearing aid market configuration and hearing aid fitting process are not representative of other AT products but IP, trade and competition policy tools used by IGOs and governments are relevant to other AT. The value chain is a useful tool to identify the location of price mark-ups and the influence of actors. Implications for Rehabilitation Market factors and reimbursement and subsidization policies drive hearing aid innovation. UN-related international government organization activities are responsive to the needs of disability populations who cannot afford assistive technology. Policy tools used by international governmental organizations are applicable across assistive technology. A partnership model is important to distribution of hearing aids to low and middle income countries.

Converging, Pervasive Technologies: Chronic and Emerging Issues and Policy Adequacy

This article is a thought piece with the expansive goal of identifying policy facilitators and barriers to the development of usable and accessible advanced information and communications technology for people with disabilities across the age span at the research and development and marketing stages. The working hypothesis is as follows: The lack of participation in and representation of the interests of people with disabilities in the technology resource system is a barrier to availability of affordable consumer goods that enable independence and community integration. Converging, pervasive computing technology, especially in housing applications, is used as a case example, drawing especially from research and development conducted by the National Science Foundation Quality of Life Technology Engineering Research Center. A critical theory approach is used to identify problems and seek solutions to the apparent lack of balance between the demand and needs of disabled users and the supply and availability of usable, affordable consumer goods produced by the technology resource system in which allocation decisions are made. The approach uses policy analysis tools such as a technology assessment framework; the participation and environment components of the World Health Organizations International Classification of Functioning, Disability and Health; and participatory action research.

Policy Issues in Communications Accessibility

The issue of communication accessibility is an extension of the concept of architectural accessibility. Communications accessibility would eliminate barriers to information flow and to communication processes for people with sensory impairments. Among the environmental factors which affect communications accessibility are the availability of technology and architectural design factors. At present some statutes and regulations apply to communications accessibility, but changes are needed in laws and regulations at the federal, state, and local levels. The economic problems raised by the need to enhance communications accessibility are similar to those for architectural accessibility, except that communications accessibility more often entails on-going costs. Although the costs of some modifications may be covered under existing laws or programs, many are not.

Full-participation of students with physical disabilities in science and engineering laboratories

Abstract Purpose: To conduct a literature review identifying barriers and facilitators students with physical disabilities (SwD-P) may encounter in science and engineering (S&E) laboratories. Method: Publications were identified from 1991 to 2015 in ERIC, web of science via web of knowledge, CINAHL, SCOPUS, IEEEXplore, engineering village, business source complete and PubMed databases using search terms and synonyms for accommodations, advanced manufacturing, additive manufacturing, assistive technology (AT), barriers, engineering, facilitators, instructor, laboratory, STEM education, science, students with disabilities and technology. Results: Twenty-two of the 233 publications that met the review’s inclusion criteria were examined. Barriers and facilitators were grouped based on the international classification of functioning, disability and health framework (ICF). None of the studies directly found barriers or facilitators to SwD-P in science or engineering laboratories within postsecondary environments. The literature is not clear on the issues specifically related to SwD-P. Conclusion: Given these findings, further research (e.g., surveys or interviews) should be conducted to identify more details to obtain more substantial information on the barriers that may prevent SwD-P from fully participating in S&E instructional laboratories. Implications for Rehabilitation Students with disabilities remain underrepresented going into STEM careers. A need exist to help uncover barriers students with disabilities encounter in STEM laboratory. Environments. Accommodations and strategies that facilitate participation in STEM laboratory environments are promising for students with disabilities

Viewpoint: Telecommunications and Internet Broadband Policy: Sorting Out the Pieces for Telerehabilitation

Technological change is accelerating and with it regulatory upheaval. Most of us agree that providing universal telecommunication services to all our citizens is a worthy ideal. Nonetheless, many of us do not agree that regulation should be the means to make broadband Internet services widely available. This Viewpoint begins sorting out pieces of the emerging United States, regulatory and policy puzzle for broadband Internet with an eye to the interests of telerehabilitation providers and consumers. Just how might changes in legal authority, regulation and agency jurisdictions impact us?

Health Information Management and Rehabilitation: Moving Toward an Adequate Ethical Framework for Telerehabilitation

With information and communications technology as its backbone, the electronic health information system has become an increasingly important component of telerehabilitation (TR) service delivery. The purpose of this chapter is to examine ethical responsibility for resolution of issues emerging within the intersection of the fields of rehabilitation and health information management (HIM). These issues involve areas of clinical competencies and user accessibility that might further inform the development of codes of ethics and other guidance for HIM and TR practice. Case studies anchor the narrative in actual problem-solving situations. Bioethics and practice documents are used to illustrate existing guidance. Conclusions and recommendations present interdisciplinary examples of research problems and best-practice initiatives, and also touch upon the ethical dilemma of the ethical vacuum when no human agent can be identified due to the complexity of the information environment.