Keele professor leading new network to improve patient voice representation in research

A new network led by a Keele researcher has been established to ensure that patients with lived experience of musculoskeletal conditions play a crucial role in shaping healthcare research. 

The LIFT network (Listening, Involving and Forging Trust in Musculoskeletal Research), has been funded by Arthritis UK in partnership with Orthopaedic Research UK and the Kennedy Trust, and is designed to ensure that research is inclusive and removes barriers stopping people from participating in healthcare research. 

Professor Krysia Dziedzic, Associate Pro Vice Chancellor Research and Impact, and Director of the Impact and Accelerator Unit at Keele University is leading the network, which will focus on improving access for underserved communities. 

The network will also support researchers studying musculoskeletal conditions who struggle incorporating public and patient involvement and engagement (PPIE) into their research.  

The goal is to ensure that both researchers and participants have the tools they need to make research as impactful and helpful as possible for the patients that need it most.  

To achieve this, LIFT will build accessible UK-wide PPIE infrastructure, giving all researchers access to people with lived experience, regardless of their seniority or their location.  

The network will also work with researchers to strengthen their pre-award PPIE to help them develop stronger, more inclusive funding proposals, as well as creating practical tools, training, and resources for researchers to share best practice.  

Professor Dziedzic said: “We’re building on decades-long established relationships with many of our partners, with hubs in Leeds, Aberdeen and Manchester. We’ll be concentrating on how underserved communities including children and young people, and underrepresented researchers can be better supported, and how they can access guidance, training, and pots of funding to do meaningful PPIE in musculoskeletal research.  

“This programme feels very special and we’re delighted to be working with Arthritis UK, in partnership with Orthopaedic Research UK and the Kennedy Trust.” 

Mala Thapar, Public Involvement Lead for LIFT said: “As a public contributor living with rheumatoid arthritis and neurodivergence, I know how important safety, clarity and inclusion are in research and for me, LIFT is about making sure people with lived experience are involved from the beginning, not brought in later, so research fits around people rather than people having to fit the system.”  

Professor Lucy Donaldson, Director of Research at Arthritis UK added: “As the UK’s leading arthritis charity, we are proud to fund research that is dedicated to amplifying the voices of people living with arthritis and finding treatment options based on their very real needs. 

“The LIFT programme is a major step forward in that direction. Their commitment to removing long-standing barriers to involvement, through improved communication between researchers and people with MSK conditions, will set a new standard for how musculoskeletal research should be conducted. 

“We believe that the 10 million children, young people and adults living with all forms of arthritis deserve to be heard, treated and supported, and are delighted to be a partner on this project which reflects these values.”  

Dr Arash Angadji, Chief executive of ORUK said: “We are delighted to be supporting an initiative that will improve the quality of arthritis research by giving researchers better access to people with lived experience of arthritis, especially those from underserved communities. We hope that it will encourage even more research into a condition that affects the lives of so many people.” 

Dr Stephen Simpson, CEO, The Kennedy Trust for Rheumatology Research said: “The Kennedy Trust is delighted to be working in partnership with Arthritis UK and Orthopaedic Research UK to support the LIFT programme. By establishing an inclusive, UK-wide Patient Voice Network, we will strengthen connections between researchers and people living with MSK conditions, particularly those from underserved communities, ensuring more meaningful and consistent involvement.”