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Patient and Public Involvement (PPI)

Patient and Public Involvement (PPI) has always been important to us at the Pain Research Institute. We have been holding regular PPI groups for over ten years, and have recently won a University of Liverpool award for our PPI involvement.

The PPI team consults with patients to shape all stages of research projects concerning chronic pain (with a particular focus on Complex Regional Pain Syndrome and Fibromyalgia) within the Pain Research Institute. 

Meetings are loosely structured and involve brief presentations from researchers on proposed studies, as well as open-ended discussions. 

Patients are invited to discuss their experiences living with chronic pain conditions - how it affects them physically, mentally, and socially - and what kind of research they would like to see in the future. Friends and family of patients are often invited to discuss how the condition has affected their loved one, and what they think research needs to address.

These meetings help to promote better research and improve patients' experience when taking part in research. 

We have multiple ongoing PPI programmes for Complex Regional Pain Syndrome (CRPS), Fibromyalgia, and long COVID.

If you would like more information, or would like to participate in the future, please contact Rebecca Mountford at R.Mountford@liverpool.ac.uk.

Fibromyalgia

Patients and researchers have come together five times so far. Our last meeting was held in May 2023.

Complex regional pain syndrome (CRPS)

Patients and researchers have come together 11 times so far, with our last meeting held in April 2023. 

Two publications have been produced from some of our CRPS PPI days:

  • Exploring the impact of pain management programme attendance on complex regional pain syndrome (CRPS) patients' decision making regarding immunosuppressant treatment to manage their chronic pain condition (2020) - Scandinavian Journal of Pain
  • Patient consultation about a trial of therapeutic plasma exchange for complex regional pain syndrome (2018) - Journal of Clinical Apheresis.

Long COVID

Patients and researchers came together in May 2023 to discuss long COVID for the first time at the Pain Research Institute. 

This meeting involved brief presentations from researchers from King's College London and the University of Liverpool, as well as open-ended discussions.

Hearing from those with long COVID helped our researchers better understand how the condition affects patients, and will help inform a new study we are putting together concerning the condition.