Targeting medication non-adherence behavior in selected autoimmune diseases: a systematic approach to digital health program development

Background 29 autoimmune diseases, including Rheumatoid Arthritis, gout, Crohn’s Disease, and Systematic Lupus Erythematosus affect 7.6-9.4% of the population. While effective therapy is available, many patients do not follow treatment or use medications as directed. Digital health and Web 2.0 interventions have demonstrated much promise in increasing medication and treatment adherence, but to date many Internet tools have proven disappointing. In fact, most digital interventions continue to suffer from high attrition in patient populations, are burdensome for healthcare professionals, and have relatively short life spans. Objective Digital health tools have traditionally centered on the transformation of existing interventions (such as diaries, trackers, stage-based or cognitive behavioral therapy programs, coupons, or symptom checklists) to electronic format. Advanced digital interventions have also incorporated attributes of Web 2.0 such as social networking, text messaging, and the use of video. Despite these efforts, there has not been little measurable impact in non-adherence for illnesses that require medical interventions, and research must look to other strategies or development methodologies. As a first step in investigating the feasibility of developing such a tool, the objective of the current study is to systematically rate factors of non-adherence that have been reported in past research studies. Methods Grounded Theory, recognized as a rigorous method that facilitates the emergence of new themes through systematic analysis, data collection and coding, was used to analyze quantitative, qualitative and mixed method studies addressing the following autoimmune diseases: Rheumatoid Arthritis, gout, Crohn’s Disease, Systematic Lupus Erythematosus, and inflammatory bowel disease. Studies were only included if they contained primary data addressing the relationship with non-adherence. Results Out of the 27 studies, four non-modifiable and 11 modifiable risk factors were discovered. Over one third of articles identified the following risk factors as common contributors to medication non-adherence (percent of studies reporting): patients not understanding treatment (44%), side effects (41%), age (37%), dose regimen (33%), and perceived medication ineffectiveness (33%). An unanticipated finding that emerged was the need for risk stratification tools (81%) with patient-centric approaches (67%). Conclusions This study systematically identifies and categorizes medication non-adherence risk factors in select autoimmune diseases. Findings indicate that patients understanding of their disease and the role of medication are paramount. An unexpected finding was that the majority of research articles called for the creation of tailored, patient-centric interventions that dispel personal misconceptions about disease, pharmacotherapy, and how the body responds to treatment. To our knowledge, these interventions do not yet exist in digital format. Rather than adopting a systems level approach, digital health programs should focus on cohorts with heterogeneous needs, and develop tailored interventions based on individual non-adherence patterns.

Understanding digital literacies: a practical introduction

Understanding Digital Literacies provides an accessible and timely introduction to new media literacies. It supplies readers with the theoretical and analytical tools with which to explore the linguistic and social impact of a host of new digital literacy practices. Each chapter in the volume covers a different topic, presenting an overview of the major concepts, issues, problems and debates surrounding the topic, while also encouraging students to reflect on and critically evaluate their own language and communication practices. Features include: coverage of a diverse range of digital media texts, tools and practices including blogging, hypertextual organisation, Facebook, Twitter, YouTube, Wikipedia, websites and games an extensive range of examples and case studies to illustrate each topic, such as how blogs have affected our thinking about communication, how the creation and sharing of digital images and video can bring about shifts in social roles, and how the design of multiplayer online games for children can promote different ideologies a variety of discussion questions and mini-ethnographic research projects involving exploration of various patterns of media production and communication between peers, for example in the context of Wikinomics and peer production, social networking and civic participation, and digital literacies at work end of chapter suggestions for further reading and links to key web and video resources a companion website providing supplementary material for each chapter, including summaries of key issues, additional web-based exercises, and links to further resources such as useful websites, articles, videos and blogs.