Peer-Led Mobile Health Design: A Critical Examination of 'empowerment' in MS Management

Multiple Sclerosis (MS) management requires responding to highly variable presentations and disease trajectories, which relies on the effective exchange of knowledge between patients and healthcare providers (HCP's). Patients must convey their lived experience of symptoms and HCP's must explain the physiological aspects of MS and negotiate appropriate clinical recommendations. In this paper, we explore the potential for digital technologies to facilitate this knowledge exchange by supporting the significant administrative undertaking ('the work') of living with MS. This work includes self-monitoring and self-reporting, as well as bridging some communication gaps by creating personalised ‘objective’ biomarkers. Peer-led semi-structured interviews were conducted with 12 people with MS to better understand two questions: 1. What barriers are people with MS facing navigating the medical system and accessing relevant health information? and 2. What features are required to create digital technologies that are useful for navigating those barriers?

These questions concretely address the meaning of 'justice' in health and medical care and in this context, we make practical recommendations for the ethical co-design of mobile health (mHealth) technologies. Transcripts were analysed through reflexive thematic analysis by three researchers with different forms of disciplinary expertise, 'power' and 'knowledge'. Two findings emerged from the analysis. First, broader issues of trust in relation to medical systems were found to be a significant obstacle to the development of effective digital tools. Second, digital tools have the potential to challenge the jurisdictional expertise of HCP's, however the likelihood of this is contingent on a broader program of consciousness raising, namely: patients understanding themselves to be experts in their health and HCP’s recognising and valuing lived/ living experience knowledge as critical to the applied outcomes of medical knowledge. We conclude that mHealth designers face challenges in securing the trust of potential users, which limits the transformative potential of their designs.