Accessing Online Data for Mental Health Research: Meeting the Ethical Challenges

Accessing data from online services can be ethically sensitive, especially when data comes from Digital Mental Health (DMH) services.  Such services hold vast quantities of naturally occurring data providing researchers with huge opportunities for new knowledge about mental health. However, these opportunities are constrained by the unique challenges involved with accessing these data and new responsibilities for researchers to promote a culture of e-trust in DMH services, and also in research. This 6-month project tests the feasibility of applying a new approach to this issue (i.e., data access and censorship optimisation) by co-producing ethical solutions with both service users as well as platform controllers.

The project will provide a much-needed exemplar of good practice which will contribute to the process of trust-building and maintenance towards DMH services. It will also establish a new partnership with an industrial partner, thus providing a foundation for future collaborative research.

This work is funded by the NIHR and runs from 1/1/2018 – 30/6/2018

Project Partners: XenZone Limited and Nottingham University Hospitals NHS Trust