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Patient and Public Involvement

The LOCOMOTION study is funded by the National Institute for Health Research (NIHR). The NIHR actively encourage patient and public involvement (PPI) in research. As a study team we provide details of our PPI in progress reports to the NIHR. On the NIHR’s ‘I want to help with research’ page, there is information about the benefits of PPI in research. The page also has details of how patients and the public can learn about health research and get involved.

Patients have been involved in the design and implementation of the LOCOMOTION study right from the start when the study was first designed. They have provided the study team with first-hand information and advice. This relates to the current services available to help them, what sorts of things are needed, and the types of symptoms they are experiencing. These first-hand accounts from patients remain essential as the study progresses. Patient volunteers are involved at every stage and representatives are present at all governance group meetings. Further information on the study design is found here.

The patient and public groups helping lead the study are the Patient Advisory Group (PAG), the Patient Advisory Network (PAN), and the External Advisory Group (EAG).

Patient Advisory Group (PAG)

The PAG is a group of 8 individuals from around the UK who have had COVID-19. As a result, they are suffering from a wide variety of symptoms which affect their normal activities such as work, family life and leisure activities. They meet on a regular basis and are supported by a Patient and Public Involvement Manager from the University of Leeds. The PAG’s role is to review study progress, make sure the research is answering the most relevant/urgent issues in Long COVID care, and ensure the patient voice is central to the study. PAG members are not just patients, they are co-researchers on the study whose input is vital to the study design, development, and delivery.

PAG representatives take part in all LOCOMOTION governance group and workstream meetings, providing an invaluable and unique insight from their experiences of Long COVID. They work collaboratively with the researchers and provide rigorous critique. Members of this group were involved at the very start of the study. Involvement included attending research planning meetings and inputting into the design of the research protocol. They also provided input into what is done in each work package, in addition to designing questionnaires and other patient information.

Icon representing two people working together. One person talking and the other person thinking about what they are hearing, to show how patient and public involvement works.

PAG members come from a range of backgrounds and have a wealth of experience, not just in living with Long COVID. Members have experience working with organisations such as the NIHR and charities on issues such as funding, patient advocacy, peer support, and effective PPI in research. The named PAG members are:

  • Clare Rayner – PAG Co-Chair
  • Ruairidh Milne – PAG Co-Chair

Patient Advisory Network (PAN)

The PAN is a network of patient representatives. Two patients from each of the 10 NHS sites which are taking part in the study form the group. They provide site-specific assistance and feedback to the researchers within each area. The study has sites in England, Scotland, and Wales.

External Advisory Group (EAG)

The EAG consists of members of the study team, independent experts, and public partners. Members are from across the UK and internationally. Our EAG meets every 6-months to challenge and provide feedback on our work to date and provide advice on upcoming work. EAG members have informative discussions with our study team to identify and prioritise areas where we can make the most progress. Members are from a wide variety of roles and professions, providing a range of perspectives to the group discussions.