Discovery research:
Summary
Lots of information is collected by our devices, sometimes without our knowledge. Researchers wanted to know whether this type of monitoring could be used to detect whether someone with bipolar depression is having a relapse. But more importantly, they needed to know whether this could even be acceptable to people with bipolar depression – what would they think of the idea? We carried out discovery research and spoke to people with bipolar depression to see what they thought, and how and when it might be acceptable. The views shared were surprising, and there was support for its use, even though there was concern it could be used against them. Participants generated scenarios about when it would and wouldn’t be acceptable, helping researchers get a sense of boundaries and possibilities for future design.
Is monitoring for depression relapse through devices acceptable to people with bipolar depression?
Exploring threat, trust and boundaries for this type of monitoring
Because this was foundational / discovery research, we needed to create a space for potential users to explore thoughts and ideas, with three cross-functional team experts alongside to hear the discussion and ask questions, considering feasibility from their own areas (engineering, computer science and psychology).
I organised a discovery workshop, and facilitated it alongside the three team members:
● 1 x workshop, circa 15 participants with bipolar depression
Discussion topics included what people thought of the idea of monitoring for relapse, what types of monitoring could detect relapse, whether it would be acceptable to people (and in what situations), and what they’d want in order to feel supported and safe.
There was group discussion, alongside post-it exercises to deep-dive into particular areas.
Defining the right ways for monitoring to be used
Findings highlighted important issues and boundaries for the researchers to take on board. Participants were keen to identify the ways in which such monitoring could be helpful, and identified markers that could indicate relapse, although it became apparent it would need to be personalised to the individual (e.g. excessive spending might be a good indicator for one person, excessive online activity overnight might be more accurate for another).
A range of important concerns were raised, that defined strong boundaries and parameters to work within:
● A core challenge was defining how it could be used to help participants, instead of being used against them
o Central to this was controlling who might have access to the information and in what circumstances
o In relation to who has access, this would need to be personalised, with health professionals and carers the most likely recipients, but not in every instance
● Understanding the ways such information could be harmful was an important part of ensuring the technology remained safe. Potentially harmful uses included:
o restricting their freedoms
o removal of benefits (or other involvement of government bodies)
o excessive control by family or others
Building in safeguards for these harms would be important in ensuring trust amongst users.
Impact of the research
The ideas generated were taken forward by the team (in a collaboration between engineering, computer science and psychology) and used as the basis for a successful PhD funding proposal. This brought circa £75,000 funding to further develop the idea, with close involvement of people with bipolar disorder to ensure their needs and priorities were at the top of the agenda.
To find out about the subsequent PhD study, you can see a summary here: