Involving patients and the public in research: Reflecting back and looking ahead

By Claire Ballinger and Mark Stafford-Watson – Chairs, Wessex Inclusion in Service Design and Delivery (WISeRD) group

It’s the end of our first year in CLAHRC Wessex, we have been thinking about our progress in involving patients and the public in our work (or PPI as it’s called), and reviewing where our focus should be for the coming year.  We have settled on five strategic aims:

• Develop our capacity for patient and public involvement (PPI) in research and implementation programmes
• Promote our CLAHRC Wessex activities to the wider public (public engagement)
• Evolve and measure ways to include patients and the public to identify research priorities
• Develop a group of patient and public researchers
• Measure the impact of patient and public involvement within CLAHRC Wessex

Can we discuss end of life care with patients with COPD?

Nuno Caixinha Tavares – Staff Nurse at Queen Alexandra Hospital
Clinical Academic Fellow in the University of Southampton
NIHR CLAHRC Wessex – Theme 1 – Integrated Respiratory Care

I’m Nuno Tavares, a staff nurse at Queen Alexandra Hospital and I’m also a PhD student carrying out research for NIHR CLAHRC Wessex and Portsmouth Hospitals NHS Trust. My research is about improving end of life care for patients with COPD.

Why staying well is hard work. Professor Carl May – Healthcare Innovation

Living with a serious long-term condition is often hard and complex work. My team and I are interested in finding ways to reduce complexity and lift the burden for people with these conditions, and their families, at end of life.

To help us think about the kind of research questions we should be asking we held a research forum at Freemantle Community Centre in Southampton. We invited people with a range of conditions to join us and to inform our work.

How networks add meaning to people living with long term health conditions – Dr Anne Kennedy

Improving the network of support for people with long term conditions is a more sustainable way to help than appealing to them to change their behaviour. Connections between people often encourage action and the use of the resources around them in a more meaningful way in their everyday lives.

At CLAHRC Wessex our flagship project is the implementation, across the region, of GENIE a web-based tool which is designed to assess and develop the support networks of people with long-term conditions. People can map their support networks and state their preferences and needs in order to link them to local organisations for health and well-being support.