Lab-based research can sometimes feel a million miles away from the people set to benefit from it, but that doesn’t mean that people aren’t interested in hearing about it or that researchers can’t benefit from engaging the public. While doing my PhD research with fruit flies, I discovered how engaging people with my research helped me maintain perspective and motivation – and now I work in public engagement, trying to facilitate the same for researchers!
In this blog, I’m going to discuss some of the different ways of opening up basic research to members of the public, the benefits it can bring to you and your work and how you can get started. I’m focusing on basic, lab-based research, and not clinical or social research. And I’m interested to hear from lab-based dementia researchers about their experiences of public engagement and involvement, and what they are keen to try for themselves, or the opportunities they are looking for.
Involvement, participation or engagement?
You may hear different words and phrases used when people are talking about ways of engaging with the public, so it’s useful to understand whether they actually mean different things in practice. The three you may have heard of are involvement, participation, and engagement.
- Involvement is when people with a condition (like dementia) or their carers input into the research process.
- Participation is when people take part in a study (which I won’t go into more detail on).
- Engagement is when you share information about your research and discuss your work with people affected by a condition or other members of the public.
People can define and interpret what involvement and engagement mean in different ways, and some may argue that involvement in basic research looks more like engagement. Semantics aside, the suggestion for involvement isn’t that members of the public carry out the research (and run PCRs/western blots/immunostaining etc) or decide the details of the experiments you plan to conduct.
People with dementia and their loved ones are more than just patients and carers, they are specialists in their condition and their experience. And we need to think of ways to incorporate their knowledge where possible.
There are many examples of how people with experience of dementia have been involved in shaping research priorities, and it is something we do here at Alzheimer’s Research UK. This is an area of work we’re keen to develop further because we know that understanding what is important for people affected by dementia can ensure that we fund biomedical research that has the greatest impact.
Why should I engage or involve the public with my research?
Misunderstandings and stigma around dementia persist across society. Public engagement and involvement with dementia research can create opportunities to spark discussion and reduce stigma around the condition. For many people affected by dementia, hearing about efforts to answer fundamental questions about the condition provides a sense of hope and optimism for the future – that future generations will benefit from improvements in diagnosis and treatments. Being able to get involved and help shape research is even more rewarding.
It’s also an opportunity for people affected by dementia to share their experiences, giving researchers insight into how dementia can affect daily life, the variety of symptoms, and challenges for which research could provide solutions. Hearing personal stories can help researchers understand the context of their research and see the bigger picture. Through discussion with non-scientists, researchers can improve how they translate scientific concepts into understandable ideas, while also shaping their research direction. And engaging and involving the public can help scientists stay in touch with the reasons why they are doing their research, which can be hugely motivational.
Where could I start?
If you’re interested in involving or engaging the public in your work, you may not be sure where to start. So here are some questions to run through to help your thinking:
- Who do you want to engage with? Is it the general public, people living with dementia or their loved ones and carers? If the general public, can you be more specific, in terms of age, location, ethnicity etc?
- What is your purpose and aim? Do you want to find out more about the experience of dementia? Or start a conversation to better understand the potential impact of your research? Do you think your research is potentially interesting to others and you want to share it?
- How do you want to work with them? For involvement, is it collaboration or consultation? For engagement, is it dissemination or discussion? Will it be a one off, or an ongoing relationship? Do you need to formalise the arrangement?
- When in the research process? Are you looking to shape a research proposal? Or are you about to start a project and want to consult with non-scientists along the way to guide ongoing decision making? Or are you looking to share your results? Or work out your next steps and the direction to take your research?
Answering these questions can give you a clearer picture of what your next steps could be and who you can turn to.
Your university, institution or department may have teams or individuals tasked with helping researchers engage or involve the public in their work. They can help you get a clear picture of what you want to achieve, explore the possibilities, and get you started.
Current and potential research funders may also be able to help and advise, so talk to them to find out if they have requirements for public and patient involvement in applications, or what support they could offer to ongoing projects.
If you’re keen to find out more about involvement, check out the INVOLVE guidance and resources from NIHR as there is a wealth of information about what researchers should consider when getting started with involvement activities and relationships.
For UK based researchers, you can join the Alzheimer’s Research UK Research Network, as each Centre receives funding to hold public engagement events and activities each year. The UK has a thriving science festival scene, and a number of universities/institutions put on their own festival-type events each year. These can be great fun, with chances to create table-top activities or talks to explore your research. Charities and learned societies often put on activities at events like this and have opportunities for researchers to get involved.
If you’ve got your own ideas for ways to engage people with your work, there are a range of funding sources you can apply to and bring your ideas to life – check out the National Coordinating Centre for Public Engagement who have tools, resources and information on funding to help you get started.
I’m always really happy to discuss ideas, offer advice or sign post to training and resources – this blog is by no means exhaustive. So drop me a message if you’d like to chat!
Ed – If you are outside the UK try approaching your research funder or dementia charity, in the US the NIH have number of programmes to help. If you’re interested in sharing your research we provide opportunities for you to present your research.
Dr Katy Stubbs completed her PhD at University of Southampton investigated axonal degeneration in a Drosophila model of tauopathy. Armed with a passion for public engagement, Katy leads on public engagement for Alzheimer’s Research UK. She organises the charities presence at events where they talk to people about dementia, breaking down the myths that surround the condition and showcasing the power of research. Katy is always searching for new opportunities and ways to engage the public, and to explore ways to support researchers to engage and involve the public with their work.
Do you have an resources or ideas you can share on public engagement and involvement? Let us know some of the feedback you’ve had, using the comments box below.