Deborah Hall, University of Nottingham, UK and Malaysia.
Having been an academic hearing scientist for more than two decades, I am excited by the recent moves within the scientific establishment away from merely engaging with the public as people “to do science on” to actively involving the public in “doing science together”. This is an approach that has always been strongly advocated by The British Tinnitus Association. A great example of this type of Citizen Science was the James Lind Alliance Priority Setting Partnership on tinnitus back in 2012. This remains a collaborative “people powered” research project in which I am most proud to have been involved. At the time, it also broke new ground by attracting a massive 2,483 submitted research suggestions from people with tinnitus and clinical practitioners with the intention to shape the research agenda towards topics that matter to patients. This demonstrated to me the clear appetite people had to have their say in research.
Fast forward to 2020, engaging people with tinnitus as equal partners in a research project is now much more commonplace, especially across the UK where government funders – such as the National Institute for Health Research – score project proposals on the degree to which they involve members of the public on the team, often with “patients” themselves sitting on the project review panels alongside academic experts.
I was also the UK founder of the Core Outcomes Measures in Tinnitus (COMiT) initiative – a long term programme which again has patients at its heart. The aim of this programme is to influence how clinical trials are designed and conducted by establishing a core set of outcomes that are measured and reported in all clinical trials assessing interventions for chronic subjective tinnitus in adults. This goal is important because without any minimum standard, findings cannot be compared across trials. This in turn not only leads to a waste of valuable research resources, but also prevents doctors for being able to make informed decisions about which interventions are most effective.
The first COMiT project was managed by people with a diverse range of backgrounds. Academic researchers (including myself), healthcare practitioners and members of the public with the lived experience of tinnitus all contributed to the design and delivery of the project. We used a web-based survey to reach out to over 700 participants from across 41 countries. We asked them to help us to co-produce a set of recommendations about what outcomes were critically important in deciding whether a tinnitus intervention is effective. You can read about our main findings in two journal articles; one published in 2018 and one in 2019. And we’ve also published a third article to share good practices on how to involve patients in this type of research. These are openly accessible to all, and were co-written with the two members of the public on our project management team.
Examples of the core outcomes that were recommended include “intrusiveness”, “sense of control”, and “acceptance”. However, at this point we hit a snag because without explicitly defining or describing these intended outcomes, progress can’t be made to work out how best to measure these concepts. The discussions with our healthcare user participants indicated that people have different ideas about these concepts and they interpret them in a range of ways. So we worked out that we needed to establish a clear and fully elaborated definition for each; moving from an abstract or vague concept to an operationalised and measurable construct. Only then could we begin to ask questions about how each core outcome should be measured.
Again, Citizen Science came to the rescue. Web-based platforms are growing in popularity within the tinnitus research community. From self-help, to recruiting research participants, to collecting research data. The latest COMiT project, published in this month’s issue of I-JMR, used a web-based discussion forum hosted by the TinnitusHub. The forum gave us a platform to co-produce these definitions and descriptions through discussion and voting by members of the public who have tinnitus. I can’t think of a better way to engage people in research. We had 251 people registering, 119 actively commenting in the discussion threads, and 158 votes cast. And again, we were able to reach out to people living in countries beyond the UK.
Citizen Science is still controversial for some. While the scientific establishment is outwardly enthusiastic about this sort of activity taking place at the margins of science, an article in the Guardian newspaper in 2016 claimed that fears existed behind the scenes. Among the academic experts in hearing and tinnitus, I’ve certainly met my fair share of those who’ve told me that giving citizens the keys to the ivory tower either is not necessary (“scientists know best”) or is a recipe for bad science.
For those of us within the academic community who are passionate advocates for Citizen Science, one way to overcome these prejudices is by providing good evidence to counter those views. In that respect, I hope that our latest COMiT project with theTinnitusHub takes a step down that road. Please support a social revolution! ‘Like’ and retweet our I-JMR paper today.
I believe that profile raising activities such as the James Lind Alliance Priority Setting of unanswered research questions, modelling the national economic cost of tinnitus and establishing NICE guidelines for NHS practice will really make a positive difference for the future of tinnitus research. Our team at the University of Nottingham is delighted to be playing a key role in this exciting journey, working with British Tinnitus Association and other partners.
