Foresight study on online health community: The perspective of knowledge empowerment for patients with chronic diseases

Abstract

Patient empowerment is an indispensable precondition for patients to self-manage their disease. The article takes the position that patients are empowered for disease self-management through patient knowledge empowerment when sharing knowledge. One of the most important instruments to successfully empower a patient to manage a chronic disease and maintain social relations, which are also a precondition for the prevention of chronic illnesses, is the possibility to access online health communities (OHCs) and participate in them. The aim of the article is to model possible development scenarios of OHCs as enablers of patient knowledge in relation to other digital health technologies (DHTs). A foresight methodology was used to achieve the goal, employing a technology scanning approach after selecting 10 foresight studies, which resulted in four future scenario models for the empowerment of patients wcith chronic diseases through digital health communities. They reveal options for the future interoperability of OHCs with other DHTs and highlight their importance and significance for the healthcare system as a technology for balancing patient self-efficacy and social relations as well as the need to maintain and develop them.

Thrombocytopenia Absent Radius (TAR)-Syndrome: From Current Genetics to Patient Self-Empowerment

“…It is known that patients with chronic disorders who have more information about the underlying disorder cope better. 63 In our experience, it is very helpful if families can connect with others affected by the disorder to see how life can be managed with short forearms or low platelets. In addition, it is possible for patients and relatives as well as physicians to clarify all open questions as competently as possible in the knowledge of the diagnosis.…”

The dynamics of knowledge sharing in chronically ill patient‐led online health communities

“…Empowered patients are patients who, through the process of empowerment, have changed from passive recipients of information to active partners in healthcare, able to select from a wealth of information and to make the decisions most appropriate for the course and state of their disease. 4,18 An empowered patient is much more than an 'informed' or 'educated' patient, as it is not only important to have knowledge, but also to be able to use it in certain situations, which may not be standard.…”

“…21 Activated, because empowered, patients are those who are active in an OHC. 4 The interest of chronically ill patients to operate in OHCs can be explained more broadly by the core principle of social exchange theory: social exchange is a two-way, mutually contingent, and mutually rewarding process, involving transactions or simply exchanges. 22 By participating in online communities, patients aim to share the knowledge related to their chronic disease and to benefit from that.…”

“…Online health communities can therefore be described as an enabler of patient knowledge when sharing knowledge. 4 Empowering patients with chronic diseases means involving patients in health-related decision-making and conscious management of everyday situations in a health-friendly way. This results in a smaller financial burden on the healthcare sector.…”

“…In this way, knowledge is ‘grown’, and it empowers chronically ill patients for adequate self‐care in their daily lives. Online health communities can therefore be described as an enabler of patient knowledge when sharing knowledge 4 …”