Participation in Mhealth Evaluation: The Case of a Smartphone App for HIV Patients

The focus of this paper will be participation in the context of technology development and implementation in healthcare. The ‘case’ is a smartphone app for HIV patients, being developed in the context of the EU Horizon 2020-funded ‘EmERGE’ project, which aims to develop, implement and evaluate an mHealth platform to enable self-management amongst stable HIV patients in 5 clinical sites across the EU between 2015 and 2020.

People with HIV are participating in this through their involvement in the ‘sociotechnical evaluation’ of the process, led by the authors of this paper. While other Work Packages undertake economic and patient outcomes-focused evaluations, the sociotechnical evaluation is a formative, iterative and participative form of evaluation. This involves engaging the HIV community and patients in ‘co-design’ at all stages of the process- from design and development, through implementation to routine use- with the aim of achieving a better ‘fit’ between the technology and the care practices within the different study sites, as well as sharing learning about what ‘works’ both within and across study sites. Thus, it seeks not only to understand what makes for success in the implementation of new technologies in healthcare but to contribute towards the chances of success through participatory methods.

In this paper, we reflect on the first year of our work with the HIV community and highlight the challenges and opportunities that arise when seeking to engage citizens and patients in mHealth technology developments in healthcare. We reflect, in particular, on the ‘performativity’ of our methods and draw on Law and Urry’s notion of ‘enacting the social’ to explore how our approach to evaluation might be understood as ‘enacting the sociotechnical’ in mHealth research.  We consider the challenges of taking this approach as part of a larger study with a more conventional ‘trial’ design.