People-powered research: but what actually is it?

People-powered research: but what actually is it?

Our vibrant communities are at the heart of the ActEarly city collaboratory approach

As John mentioned in his last blog post, our communities are at the heart of ActEarly. If we’re going to achieve sustainable changes in health and our ‘systems’ that promote health then we need to start in harnessing the views and creativity of our citizens. We like to think of the ActEarly project as ‘people-powered’. Co-production and citizen science are the key underpinning approaches which will ensure we achieve this genuine partnership with our communities and stakeholders. But what do we mean by co-production and citizen science? As we’ve started our ActEarly journey we’ve realised that these terms mean many different things to many different people! So our first job has been to spend time defining exactly what we mean by ‘people powered research’ and the values and principles that we want to follow. All of us within the co-production and citizen science group come at our respective practices with a set of varied and diverse experiences, but with some core principles that keep us motivated and focussed on doing our work in a particular way. They can be boiled down to: empowerment and equality, shared knowledge, and meaningful involvement.

Our Born in Bradford parent governor group have been crucial in helping us to shape the direction of Born in Bradford and ActEarly

For the first few months of ActEarly, we’ve been sharing these experiences and values with stakeholders, community members and citizens. Since there are so many different ways to do co-production and citizen science, and even amongst us consortium members, we all have different interpretations of what these terms mean, we’ve been working towards developing a positioning paper on citizen science and co-production in public health. It’s a slow and steady process, but one that’s proving incredibly rich and rewarding. We’re now starting to share this work with the rest of the consortium and to continue our conversations about what we really mean by co-production and citizen science, and how these approaches are crucial to the collaboratories we’re developing with ActEarly.

On the co-production side, we’ve been trialling a number of different ‘co-production’ approaches in Bradford to help set the focus for our ActEarly consortium members. Our first task was to work with our community steering group to identify Bradford’s ‘top ten’ priorities for ActEarly. We’re adapting an approach which has been used widely in more traditional health research agenda settings (the James Lind Alliance approach). Our approach is simple: give communities a blank canvas and pose the question ‘what do you think is important to keep children healthy and happy?’ We’re busy analysing information from over 1000 Bradford families and will be co-producing our final list with communities and stakeholders in the next couple of months – watch this space! We‘ve also been doing practical work with communities using a place based approach. For example, we have been working with local mosques around the issue of childhood obesity. We are exploring how bringing local community action groups together with health and local authority stakeholders can help to create neighbourhood based change to tackle obesogenic environments, for example, influencing menu options in takeaways, safe places to place. We are also looking at how to work with faith leaders and volunteers to make obesity prevention an everyday part of mosque activities.

What are the causes of obesity in our neighbourhood? Here a local group within a Bradford Mosque help us identify what ActEarly should focus on to reduce obesity

To develop our citizen science approach we’ve drawn on the hugely important participatory mapping work of organisations such as Mapping for Change, and the extreme citizen science approach of the ExCiteS research group at UCL. ExCiteS sees extreme citizen science as a situated, bottom-up practice that takes into account local needs, practices and culture, and works with broad networks of people to design and build new devices and knowledge creation processes. For ‘Extreme’ Citizen Science projects to succeed, a narrow disciplinary knowledge is not enough. It requires the engagement of communities, overcoming many technical and human-technology interaction challenges and the ability to deliver practical solutions, in addition to an understanding of the questions surrounding the science of citizen science. In this sense, Mapping for Change and ExCiteS focus on participatory sensing, monitoring and modelling activities, with communities deciding what measurements are taken and how they are analysed, so that they can participate in and lead subsequent decision-making and actions.

Here a group of young people take us on a ‘walk’ round their local neighbourhood, collecting photos and thoughts about how their environment influences health

So what does the future hold? Well, if we’re genuinely adhering to our principles of co-production and citizen science, we don’t know yet! We look forward to working with our communities, stakeholders and the ActEarly consortium to shape the initiatives that are implemented to improve health in Bradford and Tower Hamlets. But one thing that we are sure of is that by creating genuine, meaningful and lasting relationships with our communities, listening to their needs and co-producing initiatives to improve health, we will have the best chance of succeeding.

 

 

Alex Albert: Citizen Science Research Fellow, ActEarly (a.albert@ucl.ac.uk)
Rosie McEachan: Director Born in Bradford, and Co-Production Lead, ActEarly (Rosie.McEachan@bthft.nhs.uk)

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