Health-Related communication and rare diseases

Rare diseases are often characterized as diseases with low prevalence in population that stem from genetic disorders or environment conditions. As a result of its low prevalence and lack of knowledge of its causes, symptoms, and/or treatment, patients’ access to healthcare, and their quality of life may be affected. A key challenge is also the physician-patient interaction that differs from traditional medical care settings by demanding physicians’ experience in dealing, for example, with psychological problems associated with the diagnosis process. Information and Communication Technologies can facilitate the interaction between the sources of information and patients, overcoming geographical distances. This chapter discusses the role of Information and Communication to extract health data in rare diseases and reinforce physician-patient interactions. It argues that Information and Communication are crucial to meet patients’ needs, drivers, and decision-making that tend to occur during the patient’s journey (pre-diagnosis, diagnosis, and post-diagnosis)

Times of change, times of turbulence: seeking an ethical framework for curriculum development during critical transition in higher education

Rapid changes in academic work environments raise ethical dilemmas in supporting students, implementing policies, and developing professional practice. New teaching technologies require academics to consider community aspects of learning and teaching and impacts on student learning in networked environments. This paper critically reflects on recent experience at a small Australian regional university adapting teaching-notably through on-line environments- to respond to student learning need diversity. Applying Shapiro’s use of the ethics of care, critique, justice and the profession to examine ethical dilemmas associated with increasingly networked and on-line learning, the authors propose that an ethics of community will assist finding practical solutions to ethical dilemmas in curriculum development and delivery. This approach shifts from the individual as moral agent to ethical practice as communal processes. Considering community practices and processes can frame and critique learning and teaching approaches, policies and administration to assist students and staff develop ethical scholarship and professionalism