Empowerment of patients in online discussions about medicine use

Abstract

BackgroundPatient empowerment is crucial in the successful self-management of people with chronic diseases. In this study, we investigated whether discussions about medicine use taking place on online message boards contribute to patient empowerment and could subsequently result in the more effective use of medicines. We discuss the extent to which patient empowerment processes occur in discussions on online message boards, focusing on patients with three disorders with different characteristics: diabetes, Amyotrophic Lateral Sclerosis (ALS) and Attention Deficit / Hyperactivity Disorder (ADHD). Because information is an important factor in both patient empowerment and self-management, we also evaluate the quality of the information being exchanged.MethodsWe used a deductive thematic analysis method based on pre-existing categories. We gathered and analysed 5532 posts related to the conditions ADHD, ALS and diabetes from seven message boards (three for ADHD, three for diabetes, and one for ALS). We coded the posts for empowerment processes and the quality of the information exchanged.ResultsWe identified patient empowerment processes in posts related to all three disorders. There is some variation in the frequency of these processes, but they show a similar order in the results: patients used the online message boards to exchange information, share personal experiences and for empathy or support. The type of information shared in these processes could contribute to the patient’s self-efficacy when it comes to medicine use. The exchanged information was either correct or largely harmless. We also observed a tendency whereby participants correct previously posted incorrect information, and refer people to a healthcare professional following a request for medical advice, e.g. concerning the choice of medicines or dosage.ConclusionsOur findings show that patient empowerment processes occur in posts related to all three disorders. The type of information shared in these processes can contribute to the patient’s self-efficacy when it comes to medicine use. The tendency to refer people to a healthcare professional shows that patients still reserve an important role for healthcare professionals in the care process, despite the development towards more self-management.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-015-0146-6) contains supplementary material, which is available to authorized users.

Promoting self‐efficacy in patients with chronic disease beyond traditional education: A literature review

“…Increasing lifespans and the shift from physician‐managed care to patient‐managed care has created the need to promote self‐management of disease processes and improve outcomes (Cameron et al, ). In addition, patients are expected to take a more active role in their medical care and be knowledgeable about and manage diseases (Anekwe & Rahkovsky, ; Cameron et al, ; Henselmans, Heijmans, Rademakers, & Van Dulman, ; van Berkel, Lambooij, & Hegger, ).…”

“…Promoting self‐efficacy can improve the outcomes and quality of life for patients living with chronic diseases (Wu, Hsieh, Lin, & Tsai, ). Traditional forms of education that include a discussion between the patient and caregiver, as it is well documented in the literature, are not sufficient in providing patients with the necessary understanding and skills to manage their disease and minimize complications (van Berkel et al, ). This literature review aims to identify the barriers to self‐efficacy and promote self‐efficacy by exploring non‐traditional strategies that can be implemented in healthcare settings.…”

“…People's beliefs in their efficacy have a direct impact on meeting one's goals (Bandura, ). Therefore, to improve self‐management of disease processes, patients must have increased self‐efficacy and believe they can manage their disease (s) (Bandura, ; Cutler, Crawford, & Engleking, ; van Berkel et al, ; Wilson et al, ). Furthermore, Anekwe and Rahkovsky () argue that any patient with a chronic disease, no matter the type, needs a skill set for managing it and self‐efficacy is one of them.…”

Analyzing Empowerment Processes Among Cancer Patients in an Online Community: A Text Mining Approach (Preprint)

“…We used 25% of the training set for optimizing c, training on 75% of the train set, and evaluating different values of c on the remaining 25%. We experimented with a grid ranging from c=10 -3 to c=10 3 in steps of x10, as suggested in the documentation of scikit-learn [31]. We found c=1.0 to be the optimal value in terms of F1-score (averaged over the five binary classifiers for the empowerment constructs), thus we used c=1.0 when training Linear SVC on the full training set (80% of all data), evaluating on the held-out test set (20%).…”

“…Background Peer-to-peer online support groups and the discussion forums in these groups can help patients by providing opportunities for improving their empowerment [1][2][3][4]. Empowerment is a process by which patients gain mastery over their situation [5,6].…”