Citizen Science: an inclusive approach to science

Professor Deborah Hall, Professor of Hearing Sciences, Faculty of Medicine & Health Sciences, Vice-Provost (Research and Knowledge Exchange) at UNMC

Professor Hall is a passionate advocate of Citizen Science which, as any activity where members of the public are actively involved in producing new knowledge, reflects a radical twist on the conventions of medical science. Professor Hall is keen to support the move in science from merely engaging with the public as people “to do science on” to actively involving the public in “doing science together”. She aims to provide good research evidence to counter the views against Citizen Science and overcome the prejudice against it.

Professor Hall’s research expertise is in tinnitus. Core Outcomes Measures in Tinnitus (COMiT) is a long-term programme that has citizens at its heart. Its aim is to set a new standard for clinical trials for chronic subjective tinnitus in adults. Specifically, COMiT focusses on establishing a core set of outcomes to measure the effectiveness of new treatments. The first COMiT project was managed by a diverse group, including academic researchers, healthcare practitioners and members of the public with the lived experience of tinnitus. Patients with tinnitus were expected to be involved at every step as co-researchers; namely designing the study, collecting the data, analysing the data and reporting the findings. A web-based survey was set up to reach out to over 700 participants from across 41 countries. The patients helped Professor Hall and team co-produce a set of recommendations about what outcomes were critically important in deciding whether a tinnitus intervention is effective. Paying attention to how a diversity of tinnitus patients define improvement in their condition was a key novel dimension of the research.

The success of the latest COMiT project, with Tinnitus Hub as a partner, was based on a diversity of input and the inclusiveness of patients as co-creators of the research outcome.