The story of a comment at a Public and Patient Involvement (PPI) Group by a patient contributor that turned into the award of a successful patient co-led grant.

Lynn Laidlaw (Patient Researcher), Joyce Fox (Patient Researcher), and Dr Charlotte Sharp (Principal Investigator) tell the story of the project – “Understanding Personal Shielding Experiences of People Living with Arthritis and Musculoskeletal Disease”. They say that the success of a patient co-led application and research grant has three key ingredients – conversations, collaboration and relationships.

Conversation

The conversation that kick-started everything was only possible because the Centre for Epidemiology (CfE) Versus Arthritis is committed to involving patients in their research.

At the start of the COVID-19 pandemic, the CfE began working on a COVID-related project analysing the patient health records of people living with arthritis and other rheumatological diseases. Their goal is to identify patients who were “clinically extremely vulnerable” and who needed to shield, using a series of quantitative methods.

The CfE rapidly recruited a COVID-specific PPI Group to collaborate on the research. The meetings between the researchers and the PPI Group created the space for conversations and critical challenge, including the crucial comment by Lynn Laidlaw championing the importance of hearing the patient stories behind the data.

That is how the idea of collecting and understanding the personal shielding experiences of people with arthritis and other musculoskeletal conditions was born.

Collaboration

The initial idea quickly led to further conversations that took the idea forward. Shortly after, our core research team – Lynn Laidlaw, Joyce Fox, and Dr Charlotte Sharp – was formed. The three of us used our previous experiences to contribute to this successful grant application.

Lynn had been a Patient Insight Partner with Versus Arthritis for 4 years, worked closely with the charity’s research team and had a good understanding of their funding opportunities and application process. Crucially, she knew that they were open to considering funding research co-led by patients; their “New Opportunities Fund” (light touch application process and rapid decision) seemed a perfect vehicle!

Joyce has worked with the CfE as a Patient Partner for the past five years and has developed close working relationships with staff and researchers through the process of co-developing the PPIE Strategy, facilitating its implementation across the CfE and its research portfolio, and working with research teams. At the start of the COVID-19 pandemic, Joyce worked with the CfE PPI Lead, Dr Katie Druce, to recruit a COVID-19 specific public involvement group to work with the research team. This enabled the start of conversations between Joyce, Lynn and the CfE, giving us the opportunity to develop relationships and conversations that led to the research idea of understanding personal shielding experiences.

Charlotte had worked with Joyce previously when developing the Choosing Wisely UK recommendations on behalf of the British Society for Rheumatology. She had met Lynn at a conference and was aware of her profile as a prolific advocate for patient and public involvement in research, from Twitter. Charlotte is passionate about conducting research and service improvement with patients as partners, so the opportunity to collaborate with Joyce and Lynn on this important research is one she feels very lucky to have been given by the CfE.

Relationships

Finally, meaningful and trusted relationships have been key to our collaboration so far. None of this would have been possible without the wider support offered by the Centre for Epidemiology Versus Arthritis which has been invaluable in navigating our way through the process of grant submission and supporting us professionally and personally. Particular thanks and appreciation go to Prof Will Dixon, Prof Caroline Sanders, Denise Faulkner, Elaine Mackey, Ilina Serafimova and Ruby Bhatti.

We also had informal conversations with researchers, public contributors and organisations in our networks who were willing to be a critical friend and help us refine our thoughts and ideas. There are too many people to mention individually, but we are really lucky to be part of the wonderful involvement community.

At the start of this process, we had been in a state of blissful naivety but now we need to get on and do the research!

If you are a researcher, you may be interested in finding out how you could develop a similar study with patients as fellow researchers. If you are interested in finding out more about any aspect of our study, or our experiences along the way, we’d love to hear from you and have a chat.

Contact us:

• Joyce Fox and Lynn Laidlaw, Patient Researchers: lynn.laidlaw@manchester.ac.uk
• Dr Charlotte Sharp, Principal Investigator: charlotte.sharp@manchester.ac.uk

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