How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient–physician interaction

Abstract

People with rare diseases often face challenges, due to the low prevalence and the resulting lack of knowledge of their healthcare providers. Communication processes in this context are mainly affected by the role behavior of both the patient and provider. The present study showed the relevance of the provider's ability to acknowledge the active role of the patient as an informed, involved and interactive partner in the treatment process. However, allowing the patient to control therapy may require a change of mind-set with some long-standing traditional roles in healthcare.

Are Patients and Relatives the Better Innovators? The Case of Medical Smartphone Applications

“…Oliveira et al (2015) found that 36% of all patients with a chronic condition or their relatives innovated in relation to their needs. These findings are in line with a growing body of literature that indicates that patients are gaining increased medical expertise in relation to their disease (Budych et al 2012;Hartzler and Pratt 2011;Greenhalgh 2009;Thorne et al 2000).…”

“…Subsequent studies found evidence that the Internet has become a significant source of health information (Hartzband and Groopman 2010;Camacho et al 2010;Khechine et al 2008;Bodkin and Miaoulis 2007;Mukherjee and McGinnis 2007;Dickerson and Reinhart 2004). Today, patients actively use the Internet to get access to medical information and thus become informed patients that no longer only depend on their local healthcare providers (Budych et al 2012;Camacho et al 2010;Khechine et al 2008). For health professionals, the Internet also serves as a significant source of information (Hartzband and Groopman 2010).…”

A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders

“…Our data challenges HCPs to review their role in knowledge sharing with patients with rare disease (Budych, Helms, & Schultz, 2012). HCPs who view adolescents with NMD as experts in their own condition, elicit their questions and concerns, and who provide feedback appear more likely to optimize youth's health literacy and self-management skills.…”

A systematic review of research into rare diseases in the educational sphere

“…However, communication via social networks should not be forgotten. In the case of RDs, due to their low prevalence and the lack of experience, on the one hand patients are obliged to seek knowledge about their own condition using the net (Budych et al, 2012). Social networks of patients offer people with specific health problems the chance to share experiences as well as to seek, receive and provide information, advice and even emotional support online (Torrente et al, 2010).…”