User Needs in the Development of a Health App Ecosystem for Self-Management of Cystic Fibrosis: User-Centered Development Approach

Abstract

BackgroundDigital self-management in cystic fibrosis (CF) is foreseen as a means toward better understanding of the disease and its treatment and better adherence to the treatment. Mobile apps hold the potential to provide access to information, motivate, and strengthen compliance. However, to deliver high-quality apps, the development should be based on thorough knowledge about user needs. Empirical research on the user-centered development of mobile apps for health care is, however, still limited.ObjectiveThe aim of this research is to develop and evaluate an app ecosystem for self-management in CF. It targets not only those directly affected by CF but also parents and health care professionals involved in the treatment. This paper covers the first step of the design process that aims to analyze the context and the user requirements. The primary research question is as follows: what digital support has the potential to usefully support persons with CF and their caregivers in the CF care? To answer this question, we address two preliminary questions: what important factors in everyday life affect the care of persons with CF? and how is the CF care delivered today and what are the limitations of CF care services?MethodsThe overall research adopts a user-centered design approach in which future users are involved in the development process from the very beginning to ensure that the apps developed best suit the potential users. The research presented in the paper follows an interpretative case study research strategy seeking to understand the concerns and needs of persons with CF and their caregivers. Data were collected through semistructured qualitative interviews involving 74 participants in seven European countries and from internet forums.ResultsThe results of the analysis phase show a strong need for individuality of the digital support, as well as for its adaptability to different contexts. The paper presents the concerns and needs of the participants in the study and extracts a set of relevant features for a self-management app ecosystem. Education, enzyme dosage calculation, nutrition management, treatment organization, health diary, treatment follow-up, practical guidelines for treatment, communication with doctors, and communication with peers are foreseen as useful features.ConclusionsThe results indicate the readiness for self-management in the CF care even in countries that provide well-functioning health care services for CF care. The large diversity of user requirements identified reflects the crucial role user integration plays in developing apps for a chronic condition such as CF. The need for personalization stemming from the individuality of the patients and the need for communication with health care professionals support the idea of an app ecosystem for the self-management of CF.

The Limits of Empowerment: How to Reframe the Role of mHealth Tools in the Healthcare Ecosystem

“…However, if well-managed people with CF are successfully able to live relatively independent lives, without constantly having to rely on interventions from health care professionals (HCPs). 21 The extent to which individuals with Cystic Fibrosis are able to manage their own care varies considerably over their life, depending on personal factors such as age, life-stage, emotional wellbeing and environmental factors such as where the individual lives and how much they earn (Floch et al 2018). This means that for the individuals over the course of their life, the amount and type of information that should be taken into account when making decisions about their care (and who is responsible for making these decisions) varies considerably.…”

“…age) and life changes (e.g. worsening of disease) and the associated adaptations in level of intervention (paternalism) required (Floch et al 2018).…”

Exploring the Potential for Technology to Improve Cystic Fibrosis Care Provision

“…Data 'co-interpretation' depends on aligning perspectives between patients, clinical staff, and other caregivers [44]. Information exchange can be compromised as patients and clinicians expect different forms of knowledge, and there is the need to bridge gaps in understanding rather than just share data [27]. These processes of information collection, synthesis and interpretation are particularly important in chronic conditions such as cystic fibrosis (CF), where clinical engagement is intermittent.…”

“…In addition to noting homogeneity in CF care structure across European countries, it found that existing apps for CF self-management only partially meet user needs [43]. A user-centered development approach identified a range of factors in a health app ecosystem for CF, including a readiness for selfmanagement, the diversity of user requirements (requiring personalization options), and the need for communication between patients and health care providers [27]. An investigation of gamification found that patients felt social interaction, empowerment, and progression through goals was important, alongside customization and adaptability to individual contexts [34].…”

Multidisciplinary Software Design for the Routine Monitoring and Assessment of Pain in Palliative Care Services: The Development of PainCheck

“…The identification of user requirements as part of this process can lead to the development of HIT systems that are more successful in supporting patients with complex needs and symptoms. 26-28 Currently there is a lack of literature to guide method selection to support HIT systems for pain management in cancer care. 21 This report describes our experience of combining modern software development with health science research methods to create PainCheck, an HIT system designed to overcome known barriers to effective pain management for patients with advanced cancer.…”