Do participation and personalization matter? A model-driven evaluation of an Internet-based patient education intervention for fibromyalgia patients

Objectives: To evaluate the effectiveness of an Internet-based patient education intervention, which was designed upon principles of personalization and participatory design. Methods: Fifteen months after the first release of the website, 209 fibromyalgia patients recruited through health professionals completed an online questionnaire to assess patients' use of the website, health knowledge, self-management behavior, and health outcomes. These constructs were combined into an a-priory model that was tested using a structural equation modeling approach. Results: Results show that the usage of certain tools of the website - designed and personalized involving the end users - impacts patients' health knowledge, which in turn impacts self-management. Improvements in self-management ultimately lower the impact of Fibromyalgia Syndrome leading to better health outcomes. Conclusion: This study empirically confirmed that the adoption of a participatory approach to the design of eHealth interventions and the use of personalized contents enhance the overall effectiveness of systems. Practice implications: More time and effort should be invested in involving patients in the preliminary phases of the development of Internet-based patient education interventions and in the definition of models that can guide the systems' evaluation beyond technology-related variables such as usability, accessibility or adoption.