Abstract
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).
TopAlthough a precise definition of health-related communication is lacking, it is undeniable the importance of the transdisciplinary involving both health and social sciences (Lambert, & McKevitt, 2002; Schiavo, 2007). The Centers for Disease Control and Prevention (2019) defines it as:
Key Terms in this Chapter
HISB (Health Information Seeking Behaviors): The type and amount of information sources consulted and one’s decision-making and actions performed.
Patient Empowerment: The patient demand for information and both participation in active (and interactive) health management and shared responsibilities with health stakeholders.
Patient Journey: The patient responds to a disease over time, being influenced by the availability of information. These responses are physical, cognitive, emotional and social.
Paternalism (Physician-Patient Relationships): An asymmetrical structure of the relationship based on a relationship of trust and on the responsibility that the healthcare professional assumes towards the patient.
Reciprocity (Physician-Patient Relationships): A form of relationship based on reciprocity and relationship-centered care, which can be defined as an ideal relationship.
Normalization: The patients and caregivers’ attitudes and actions in daily life, regardless of the disease and inherent changes in identity and social relationships.