Tag: PPI

Why did nobody ask us?! Reflections and findings from co-produced research into children’s vaccine uptake.

In conversation with Dr Helen Skirrow, Lena Choudary-Salter and Habiba Haque

A recap on our research project

Not enough children in the local area around Church Street, Westminster, London where the Mosaic Community Trust is based get their routine vaccines.  We therefore worked together on our project that Lena Choudary-Salter (Mosaic’s CEO) named ‘Why did nobody ask us?!’ to reflect that local parents’ views who live in an area of low vaccine uptake had not previously been listened to.  We have written about our partnership working before. Children missing out on their routine vaccines is a problem not just in Church Street but in lots of areas of London and other urban areas of the UK, which are poorer and have more ethnically diverse populations.

“How patients at different stages of the steroid weaning process helped to shape and design my research”

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In conversation with: Dr Katharine Lazarus, Diabetes and Endocrine Registrar and Clinical Research Fellow, working within the Section of Endocrinology and Investigative Medicine, Department of Metabolism, Digestion and Reproduction, Imperial College London

What is your research project about and what stage are you at?

Steroid tablets, such as prednisolone are widely used to treat conditions such as asthma and arthritis. One in six people take steroids at any one time and one in 50 adults (approximately 1 million in the UK) take steroids for a prolonged period. 

Case study #16: Frontiers in Cystinuria Research – Learning from patient experience to inform precision medicine research

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Dr Toby Athersuch, Lecturer, Phenome Centre

‘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.

9 things I have learnt about Public Involvement – A service user’s perspective

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!)

“Seldom heard voices”: Should we do Patient and Public Involvement (PPI) differently?

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.

PPI meets RRI – what can we learn from the European example?

To celebrate National Co-production Week, we sat down with Rosina Malagrida (Head of the Living Lab for Health at IrsiCaixa, Barcelona) to discuss ‘Responsible Research and Innovation’ and what the U.K. can learn from the European example.