Development of MijnAVL, an interactive portal to empower breast and lung cancer survivors: An iterative, multi-stakeholder approach

Abstract

Background: MijnAVL (MyAVL) is an interactive portal being developed to empower cancer survivors. Literature review and focus groups yielded the selection of features such as access to the electronic medical record (EMR), patient reported outcomes (PROs) and related feedback, and a physical activity support program. Objective: Our aim was to present a final design of MijnAVL based on (1) health professionals' evaluation of proposed features, (2) cancer survivors' evaluation of a first draft, and (3) cancer survivors' evaluation of a functional online prototype. Methods: Professionals from various disciplines gave input to the content of and procedures related to MijnAVL. Subsequently, 16 cancer survivors participated in an interview to evaluate content and graphic design of a first draft (shown with screenshots). Finally, 7 survivors participated in a usability test with a fully functional prototype. They performed predefined tasks (eg, logging in, finding a test result, completing a questionnaire) while thinking aloud. Descriptive statistics and simple content analysis were used to analyze the data of both the interviews and the usability tests. Results: Professionals supported access to the EMR (eg, histology reports, lab results, and their letters to general practitioners). They also informed the development of PROs and the physical activity support program. Based on the first draft, survivors selected the preferred graphic design, approved the features and provided suggestions for the content (eg, explanation of medical jargon, more concise texts, notification by emails). Usability tests revealed that it was relatively easy to navigate the website and use the different features. Recommendations included, among others, a frequently asked questions section and the use of hyperlinks between different parts of the website. Conclusions: The development of MijnAVL, an interactive portal to empower breast and lung cancer survivors, was performed iteratively and involved multiple groups of end-users. This approach resulted in a usable and understandable final version. Its effectiveness should be determined in further research.