What do vaccine hesitancy, poor mental health in parents and the difficulties of recruiting transgender patients for clinical trials have in common?
The answer is that they are all health problems that have been addressed by taking a more purposeful approach for how to involve the public in research.
Wellcome’s PE team is exploring three promising ways to make the most of this potential.
1. Informing research priorities
Even before research starts, lived experience and diverse perspectives can help it to head in the right direction.
In 2015, a research foundation in Vienna called LBG crowdsourced research questions from the public on priorities for mental health research. They had over 400 submissions, which cut across 17 problem areas and seven research fields. The public and an expert jury voted on those problem clusters. They narrowed them down to three topic areas, and then to one final question: how does mental illness of parents affect the development of their children?
LBG identified sub-themes that would lead to impact and that the public would still recognise: early detection, diagnosis, effective prevention, resilience, therapeutic interventions, and medication. They then hosted an event to bring together people from a range of disciplines relevant to these questions. This led to research proposals, two new research groups and a €6 million funding programme, that helped researchers collaborate across siloes.
Whether setting or pushing boundaries for new approaches, informing relative priorities, or guiding how people are represented in research, this is public engagement with purpose.
2. Contributing to research production
A recent report by THIS institute illustrates how crowdsourcing is being used to great effect to support everything from data processing to consensus building. But while big data presents a huge opportunity for research, artificial intelligence only goes so far in analysing data. That means projects are often held back due to the sheer scale of the task – which is where the public can become a critical ally.
Cancer Research UK’s Cell Slider and Trailblazers initiatives collaborated with the public on image classification. The results were remarkable. After some trial and error, the people taking part were able to spot clinically relevant features of breast cancer cells with just 25 minutes of training and an accuracy assessment. Over the project’s life the public analysed over 180,000 images. What’s more, they were able to do this with a 90% accuracy rate, just 5% below that of trained researchers.
The public can contribute in other ways, even making the difference between whether a clinical trial happens or not. A recent HIV trial in Brazil initially struggled to recruit transgender participants. But after employing a transgender public engagement lead, they were able to invite the transgender community in. The dialogue and trusting relationships they built with the community led to successful recruitment and exceptionally low-drop-out rates.
There are also other ways the public can participate – from co-production to leading local research projects.
3. Trusting and using research
Childhood vaccination programmes will only succeed if enough families decide to opt in. Their choice may be swayed by factors such as the basic science or social factors such as the ability to access vaccination programmes. It helps to think of the public as active users of research, rather than passive beneficiaries – because the impact of research ultimately depends on the public agreeing to use it.
In Kenya, a partnership between Wellcome and Wefarm is looking at the potential of the public to influence each other. We’ll be testing whether peer-to-peer farmers’ networks can help spread better antibiotic practices in farming, in ways that work for the farmers.
Wellcome has also worked with large employers of shift workers to connect employees to research on sleep, shift patterns and health, and personalise it for their needs. There’s a high potential for impact; there are 3.2 million shift workers in the UK alone. The project opened up new research avenues and changed employees’ habits and employers’ policies in ways that could lead to better employee health and improving the bottom line. We’re now exploring how to scale this work up.
Public uptake of research can be hugely influenced by compelling and timely cultural products. UK search terms for ‘plastic recycling’ increased by 55% following David Attenborough’s Planet Earth II. It doesn’t have to be at that scale – local events like Pint of Science also help because they don’t just open up the joy of science to others, but build familiarity, comfort and critical engagement with science’s role in society.
A role for everyone
More purposeful engagement isn’t the whole story. Not everyone has access to the tools and the means to inform, use and trust research. Factors such as social standing can stop people from playing a full role.
So we’re also pushing for more equitable engagement, to make sure the benefits of participation can be shared equally, and research can have its full impact. Issues like these do mean that these new ways of working, even of thinking, will take time and effort to get right.
I recommend researchers talk to the public engagement leads at their universities, to get their advice.
And also to start those conversations earlier than they might once have done. Because only if the public is integral to the research process, will the full potential of public engagement be realised.