Patient, Public and Community Engagement & Involvement

The Brain Infections Global (BIGlobal) & COVID-Neuro Global patient, public and community engagement & involvement (PPCEI) panel is a multi-disciplinary team that includes patients/patients’ caregivers and patient advocates, each bringing different perspectives, experience and knowledge to the research programmes.

The panel meets on a six-monthly basis, and more often if needed. Meetings are now held via virtual conferencing, though prior to the COVID-19 pandemic some in-person meetings were held.

The Chair of the panel is Dr Ava Easton, CEO, Encephalitis Society, who represents the views of the panel at study steering group meetings. There is a patient/caregiver representative from each BIGlobal/CNGlobal centre in Brazil, India and Malawi, and from the UK.

The panel began as the BIGlobal patient & public involvement (PPI) panel in 2018; when the COVID-Neuro Global programme was funded in 2020, this expanded to include patient/professional representatives from a broader range of diseases, including stroke.

Definition: The National Institute for Health and Research (the funder of BIGlobal, with whom Dr Ava Easton works closely) defines Patient and Public Involvement in research as “…research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.

When we use the term ‘public’ we are including patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services.”

Our PPCEI panel has contributed widely throughout the duration of the programmes, starting with initial design of study data collection and consent forms. Meetings in March-April 2022 have enabled the panel to provide input into brain infection training, and the setup of Brain Infection Champions to promote implementation and sustainability of the BIGlobal intervention.