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Background The ubiquity of mobile devices promises to address the need for continuous management of chronic conditions at lower costs. Its rapid expansion, particularly in public health, is currently largely consumer-driven and lacking in acceptable frameworks for its wider adoption into the healthcare systems. The aim of this study is to identify the key parameters to consider in developing a governance framework for a Parkinson’s Disease Management MHealth platform. The Parkinson’s Disease Manager (PDM) system was developed to gather symptom information from patients with PD via wearable devices and a specially designed app and stored securely in a cloud, for use by clinicians, health researchers and policy makers. Methodology Twelve stakeholders were interviewed in the UK including clinicians, data managers, the public. First, the participants’ existing views about sharing personal and then specifically health data online were explored. Secondly, participants were introduced to PDM via a diagram and encouraged to explore the risks and benefits of the system with a minimum of guidance. Finally, they were asked what risks they thought might be posed by a series of specific scenarios presented through vignettes and how such issues might be addressed. Results Thematic analysis identified eight emerging themes which clustered around two overarching categories: 1. The key challenges of the system identified included: Establishing appropriate governance; Protecting the data; Ensuring sustainability; Building trust; 2. The proposed solutions included: Ethically informed governance; Embedded data custodians; Sustainable funding and engagement; Trust through transparency. Conclusions The patient’s heuristic assessment of risks and benefits is mediated by trust, which can be initially gained by association with individuals and organisations already deemed trustworthy and then consolidated and sustained through transparency and delivering on promises. Key messages The effective system design, must ensure that standards of transparency, data protection and informed consent are upheld if the coming eHealth revolution is ever to realise its true potential. The use of diagrams and vignettes to support qualitative interviews helped elucidate the importance of balancing protection, utility and sustainability to build and maintain trust.

Development of ethical governance framework for an mHealth platform for the management of Parkison’s