Having worked on the area of digital mental health for the last 10 years, I always wondered if data ethics or other formal regulatory frameworks offer enough protection to people. Let me give you a concrete example. Imagine a person experiencing mental health difficulties that benefits from sharing their experiences online. Being part of an online community that provides a sense of belonging, safety and reciprocity are important aspects for those with lived experiences that should not be underestimated. However, sharing personal content online can come with a heavy price and the risks are often difficult to judge and predict. I not talking about data being stolen, lost or hacked. I am talking about researchers accessing online data for research purposes.
Research on digital mental health produces the most intimate types of data. This data often is interrogated by researchers to inform future mental health interventions, or to evaluate current practice. From personal narratives around recovery and trauma, to forum chats where people with lived experience disclose their personal journeys or discus new medication, this data is indeed very personal.
A while back, publicly available data was considered open data, for which ethical approval or explicit consent were not required. More recently, and with the introduction of GDPR, researchers have learnt that open data and public data are not the same and that explicit and informed consent is actually a prerequisite for accessing, for example, forum or blog data that is publicly available.
The landscape for data ethics keeps changing with an emphasis on privacy, ownership and trust to protect users. However, even now, there are platforms and apps that share users’ personal data for research purposes without users realising that this is happening. Often, online platforms’ T&Cs include a paragraph indicating that users’ content may be available to third parties, for example, service improvement. This ethical practice takes advantage of the users’ inability to navigate through inaccessible legal jargon, violating their perceived sense of privacy.
When we frame our research under the umbrella of responsible research and innovation (RRI), we are opening new opportunities for reflection. RRI help researchers foster an anticipatory attitude that facilitates the acquisition of alternative perspectives and the identification of power dynamics, often invisible yet present in our lives as researchers. Through RRI lenses, we can see further and beyond ticked boxes. When we engage with stakeholders and listen to their worries and concerns, we become more empathic and respectful, and our duty of care as researchers gains a new meaning with long lasting effects.
Being a responsible researcher feels good. Caring for colleagues, taking care of projects, being mindful about the impact our research may have on specific groups of people and the environment, are some of the responsible behaviours I care about and want to promote through Responsible Digital Futures.
Written by: Elvira Perez Vallejos, Professor of Digital Technology For Mental Health, Faculty of ScienceTags: digital mental health, ethics, GDPR, online platforms, open data, responsible research and innovation, RRI