Dr Kit Huckvale
Dr Kit Huckvale explains how consultation with the Lived Experience Advisory Panel has influenced research design on the Living Lab project.
The Lived Experience Advisory Panel, consisting of a diverse group of people who have either experienced a mental illness or cared for someone who has, meets quarterly to advise on a range of the organisation’s projects, from research trial design to marketing content. Everyone has a voice when it comes to mental health, but those of people with lived experience are particularly valuable, because it’s only with their insight that our researchers and staff can deisgn studies, services and resources that are truly effective.
Can you tell us about a project of yours that the Lived Experience Advisory Panel consulted on?
The idea of the Living Lab is to establish an online hub and virtual laboratory where health care users, practitioners, and researchers can exchange information and ideas with the aim of improving the prevention and treatment of mental illness. This will include a digital registry that captures the behaviour of university students and young people to try and predict who might develop a mental illness or whose mental health might change in the future.
What was the issue you took to the Panel?
Digital consent and privacy is a big issue for research right now. It’s also topical, thanks to the increasing trend of governments encouraging individuals to move their private information online. It can be common for people to receive an overwhelming amount of legal information and give consent without really understanding the terms.
Work by a colleague in the Digital Dog team, Frances Shaw, has highlighted the challenge of explaining digital studies in ways that don’t over-simplify the information, at one extreme, or rely on jargon at the other. To investigate the feasibility of the digital registry, our team wanted to explore the best way to get informed digital consent from participants, so we asked the Panel to reflect on alternatives. We were also interested in their own experiences of consent, and asked for good or bad examples of trying to navigate terms and conditions, for example when applying for a credit card.
This was a really informative exercise. The advisory panel cottoned on quickly to what we were trying to get at and thought really quickly around a problem. This is a key advantage for a researcher – you don’t have to spend a long time explaining your ideas to get high-quality feedback.
What was some of the interesting feedback from the members about your research design?
The advisory members drew links between the question of providing consent for data collection and how data compliance is handled in the areas they work in. In general they supported the idea that we should be trying a different approach. The exciting thing was they wanted us to be more ambitious – not to just think about consent at the very start of the study but also across the life of the study. They noted it would be preferable and more interesting to see what opportunities we can give people to trace how their data are used throughout the research pipeline – from data collection to analysis to impact. It’s about being more transparent, while also connecting people to the difference their contribution has made.
Dr Huckvale will consult with the LEAP group again to present a design solution for the trial based on their feedback and insights.