Blog posts

Case Study #9: Inflammatory Bowel Disease (IBD) Patient Involvement in Research Day #IBDPRD

Crohn’s Disease and Ulcerative Colitis are the two main forms of inflammatory bowel disease (IBD) and affect more than 300,000 people in the UK. To mark world IBD day, Kapil Sahnan (surgical trainee) and Mark Samaan (gastroenterology trainee) organised and ran a National Patient and Public Involvement (PPI) Research Day for patients with inflammatory bowel disease.

They worked with a team of PPI experts including: Ailsa Hart (UK PPI lead for Gastroenterology), Christine Norton (Professor of Nursing), Nicola Fearnhead (President in waiting of the ACPGBI), Phil Tozer (an academic colorectal surgeon) and two fantastic expert patients (Azmina Verjee and Sue Blackwell). The conference was attended by 80 patients and 30 researchers from around the country!

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Completing the Feedback Loop: how to improve your Patient and Public Involvement.

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. The idea for our research study came from PPI contributors and PPI leads in the East of England and was funded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC EoE).  We designed a study to examine the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors. We carried out an online survey amongst six PPI groups in the East of England, interviews and an audit.

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What can an engineering PhD student learn from PPI?

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.

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Introducing our Patient & Public Involvement Resource Hub

Public involvement in health and biomedical research is increasingly seen as both desirable and necessary. Desirable because the public’s vast and varied experience can bring important perspectives to research. Necessary because many funders now require it.

That’s why we’ve developed the Patient and Public Involvement (PPI) Resource Hub – to guide researchers through the process of actively involving patients and members of the public in their research and projects.

Computer screen icon inset with screenshot of PPI Resource Hub
Click image to visit PERC’s PPI Resource Hub

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Case study #7: Parents with experience of preterm birth help shape Imperial research

In conversation with: Dr Lynne Sykes, Academic Clinical Lecturer
Working within: Institute of Reproductive & Developmental Biology


What did you do?

With the help of the NIHR Imperial BRC PPI award, we were able to set up a Patient and Public Involvement (PPI) group to help shape our preterm birth research at Imperial. The funding enabled us to invite 10–15 participants to three PPI meetings over a course of 12 months. We now have an established group with around seven core members and one nominated representative. The meetings have been a great way to present, and get feedback, on our current and future research plans. Group members have also helped in constructing lay summaries for several (successful) grant applications, and input into the creation of a short video as part of a recent $5 million grant application. (more…)

What does PPI look like in the Imperial NHS Trust?

Readers of this blog will be familiar with Patient and Public Involvement in a research setting. But what does PPI look like within health care services? Here Imperial NHS Trust Lay Partners Mariam Mohammed and John Norton share their perspectives. 

John and Mariam strategic lay forum

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