The recent event “Co-producing research: How do we share power?” aimed to share experiences and provide practical examples of how power can be shared in a co-produced project. Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge (INVOLVE – Guidance on co-producing a research project).
Ninety-three patients, carers, researchers and public involvement leads attended the event. In this blog, four people share their experience of the event: John and Rebecca who spoke at the event about their experiences on a project; Anna and Erica as attendees.
By Lidia Luna Puerta (@L_Luna_P)
Over the last 20 years, Singapore has become a medical research hub with global reach. The current focus is placed on translational research to close the gap between basic clinical research and patient care. Despite the growing worldwide adoption of public involvement in research, the role of Singaporeans in research is still limited.
I am a third year PhD Candidate at the Lee Kong Chian School of Medicine, Nanyang Technological University (NTU) in Singapore, exploring the potential for public involvement (PPI) in research in Singapore. Co-supervised by Professor Helen Ward, Director of the Patient Experience Research Centre (PERC), I have been working with PERC to learn from their wide experience in building capacity for public involvement amongst researchers and members of the public.
By Philippa Russell
I am a recent mature graduate from London South Bank University, where I studied a degree in ‘Health and Social Care: Administration & Management’. Over the years I’ve managed to accumulate vast lived experience from being a service user in healthcare, both as a patient and family member. I have written about what having a brain injury has taught me here.
As part of my course I had a placement with the Patient Experience Research Centre (PERC) at Imperial College London, who promote participatory approaches to healthcare and biomedical research. They advise and support researchers at Imperial to do PPI (that is Patient and Public Involvement, not payment protection insurance!).
On Tuesday afternoon we welcomed Dr Mel Hughes to join a discussion at the biannual Imperial and Partners PPI in Research Forum on involving “seldom heard voices”. Mel is a principal academic in social work; academic lead for the Bournemouth University (BU) PIER (Public Involvement in Education and Research) partnership and Deputy Lead for the newly formed research Centre for Seldom Heard Voices at BU . Mel’s perspective was interesting for two main reasons: (1) her commitment to working with “seldom heard voices”, and (2) her experience of doing public involvement both in education and social work, whereas PERC tend to focus on research.
At the 2018 Imperial Festival we opened the Patient and Public Involvement (PPI) Café for the first time. A new PPI methodology – a hybrid between a science café and a more typical PPI workshop – it was designed by five Imperial research centres in partnership with Patient and Public members.
Our aim was simple: to give the public a flavour of PPI by contributing to real-life research projects. As well as getting fresh public input into some projects, we wanted to try something novel in PPI and to have some fun.
Why a café?
Despite their modern association with tax-dodging and precarious labour, coffee houses have for centuries been associated with free discussion and the exchange of ideas.
Calls are now open for contributions to the 2018 Engage Conference. We hear from Nathan Green and Denise Sime who presented at last year’s conference. They discuss their experience of sharing their learnings on LoL-Lab, a co-created comedy event between Imperial researchers and the public. If you would like to apply to be part of this year’s conference, get in touch with us at firstname.lastname@example.org for support with an application.
What is the Engage conference?
Nathan: The National Coordinating Centre for Public Engagement (NCCPE) annual conference, Engage 2017, was held over two days in December in Bristol. We saw presenting at this workshop as a fantastic opportunity to share lessons from our own public engagement experience.
Elspeth Mathie discusses her recent study on the importance of giving feedback to the public in PPI.
Are members of the public wasting their time?
It is widely accepted that Patient and Public Involvement is beneficial for health research. However, imagine spending time giving your opinion and never getting any feedback. Some members of the public ask “am I wasting my time”? Many PPI contributors (lay members, service users, patients, members of the public) say that they contribute to the design of research studies but do not hear if their comments get to the researcher, are useful or make any difference to the research.
Biomedical Engineer Shruti Turner reflects on the recent CRISH (Co-creating Innovative Solutions in Health) course and explains that engineers could learn a lot from PPI.
In this guest blog, Imperial‘s Cathy Thomas offers advice on how to use social media to engage (and involve!) the public in your research. What have your experiences with using social media for engagement been? Share your experiences in the comments.
Why bother with social media?
There are over one billion active users on Facebook and over 100 million monthly Instagram users – which means that if you’re looking to connect with members of the public, it’s worth considering how social media and other digital tools could support or enhance your engagement activity.
The useful thing about social media is that it’s a discursive medium that encourages sharing and participation, so rather than simply using it as a tool to promote what you’re doing, there will be ways in which it can support two-way engagement.