‘Frontiers in Cystinuria Research’ was an event held last October at Imperial College London. It involved people affected by cystinuria in discussions with expert medical professionals and academic researchers active in this area. The aim of the event was to capture some of these rich patient experiences to inform future precision medicine research, while simultaneously providing a forum for patients to share their insight. We feel that these types of event are important enablers of patient-directed research development, particularly relevant in the context of rare metabolic diseases, where patient input and advocacy is often underrepresented.
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 Dr Helen Skirrow, Speciality Registrar, Imperial College Healthcare NHS Trust, London Public Health Medicine Specialist Training Program; Honorary Clinical Research Fellow, School of Public Health, Imperial College London; MatImms Research Team, International Centre Child Health, Paediatrics, School of Medicine.
Our multi-disciplinary research team of midwives, doctors and scientists investigates vaccination in pregnancy (the MatImms project) and is led by Professor Beate Kampmann. MatImms encourages vaccination in pregnancy to protect newborn babies from preventable infections. In the laboratory, MatImms studies the impact of vaccines on immunity in mothers and babies. In order to connect with pregnant women, we developed the MatImms Smartphone App to improve vaccine information available, enabling pregnant women and their support networks to make informed choices.
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 Dale Weston, Research Fellow, NIHR Health Protection Research Unit (Modelling Methodology) (HPRU(MM))
What did you do?
Our project was a Patient and Public Involvement group with 8 members of the public, attending a half-day workshop. First, they provided input on a systematic literature review drafted by a member of the research team entitled “Human Behaviour and Infectious Disease Modelling: A Scoping Review of the Literature and Recommendations for the Future”. The members of the public were sent the draft systematic review to read ahead of the workshop together with a useful guide to reading a scientific paper.
Lillie Pakzad-Shahabi, Clinical Trial Coordinator, Neuro-oncology, Department of Medicine, Imperial College London
Why did you decide to do Patient and Public Involvement (PPI) in your clinical trial?
After receiving a NIHR Imperial BRC PPI award (Round 3) to run a project with a secondary school, I stumbled across the PERC-ICTU PPI training series at Imperial. These workshops helped me to understand the importance of PPI early in clinical trial design. I decided it would be useful to involve patients from our clinic and their family members to review upcoming clinical trial protocols.
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!).
By Professor Helen Ward
Director, Imperial Patient Experience Research Centre
Imperial Patient Experience Research Centre, aka PERC, started blogging about 18 months ago with this Welcome to our Blog post. The blog was set up to “share the latest learnings and news from the PPI community, points of views from the team on the advances and issues of public involvement, case studies of good involvement practice to inspire new ideas, and a whole host of other top tips and personal pointers”.
Since then we’ve published 25 blogs, ranging from case studies of good practice and opinion pieces, through to notices about events, training, and top tips for applicants for our grants scheme.
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.
The Imperial NHS Quality Improvement team used a “community organizing approach” to run a Listening Campaign, Dec – Apr 2018. This helped them to develop their 2018-2023 Quality Strategy. Phoebe Rutherford explains how they went about it. You can hear more about their approach at their upcoming inaugural Share and Spread Improvement event.
What did you do?
We used a community organizing approach to lead a listening campaign in North West London to help shape our new Quality Strategy for 2018 – 2023. Between December and April 2018, we had around 1,000 conversations with staff, patients and community groups.