Abstract
Purpose
This paper discusses the need for health information specialists who can promote patient empowerment by tailoring the information patients receive as they cope with illness. The objectives of this study are to distinguish the various stages of coping with illness, examine the informational needs of patients during these stages, explore how web information contributes to patient empowerment, and describe the potential role of the health information specialist.
Design/methodology/approach
In order to meet the study's objectives, a qualitative research method was used in which 110 in‐depth interviews were conducted with patients who told their story of coping throughout the course of illness. By distinguishing and understanding the different stages of coping with illness, we came to distinguish the distinct informational needs during the coping process, and understand how web information contributes to patient empowerment.
Findings
The process of coping with illness has four stages. In each stage, the patient's informational needs differ, as does his ability to absorb and process information. Health systems do not provide information to match the coping stage of the patient. Patients turn to professional (hospitals, universities) and unprofessional (forums, blogs) internet sites in their search for medical knowledge. The current study, integrated with other studies that show patients' difficulties using the internet, emphasizes the importance of the information specialist in the patient empowerment process.
Originality/value
The study will aid policy makers in the process of empowering patients by demonstrating patients' dynamic informational needs when coping with illness. This study proposes a role for the information specialists that will enable them to expand into the health domain. This role is the health information specialist, a professional who will, among other things, learn how health systems work, identify types of web information sources, assess medical site quality, recognize patients' coping stages, and adapt information to individual characteristics.