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.
Exclusive interview with Dr Ava Easton, Chair of BI Global's Patient & Public Involvement (PPI) Panel
(13th May 2019)
We sat down with Dr Ava Easton to discuss her role as Chair of the PPI Panel for the Brain Infections Global project. Dr Easton is also Chief Executive of the Encephalitis Society and you can follow her on Twitter: @encephalitisava
Q: What is the role of the PPI Panel within the Brain Infections Global Study?
A: The role of the PPI Panel is to ensure that the study outcomes are related to patient benefit, in this case reducing death and disability for those suffering from brain infections. In particular, the Panel will be joining in-country meetings and will liaise outside of these meetings virtually and via email. Some of the activities the Panel might be involved in include:
- Providing a patient or public perspective on discussions; - Responding to written or verbal communication about the study between meetings; - Exploring and gathering feedback from patients/families in our respective organisations; - Providing feedback on study materials and information; - Helping with dissemination of study findings and any new materials/information for public policy and practice.
Q: Why is patient & public engagement so crucial for a study of this nature?
A: The PPI Panel is a multi-disciplinary team that includes patients, family members, and professionals acting as patient advocates, each bringing different perspectives, experience and knowledge to the study. The group has an external overview and can bring perspectives that complement the professionals and researchers at the heart of the study. We want research to be informed by inclusion and a diversity of experience and insight so that it leads to treatments and services which reflect the needs of patients and the public. We also deliver better research when we work together, embracing and respecting differing perspectives. Sometimes as researchers we can be so entrenched in the work we do that we can forget the basics or what might be important to patients and their families. Often patient and family members can provide insight into what is important to them during a period of illness or disability and this can sometimes be quite at odds with what, as professionals, we think is important to them. I guess if we are conducting research with a view to improving pathways and outcomes for patients it stands to reason we should include them and take into consideration their feedback.
Q: Why did you want to get involved in this study as Chair of the PPI Panel, and what are your objectives?
A: I was thrilled and honoured to be asked to Chair the Panel. Having nearly 20 years' experience in encephalitis and having probably worked with more encephalitis patients than anyone else in the world, I think Professor Tom Solomon felt I was a natural fit to head up a patient panel for this global study. The study is so important and will reduce death and disability in a range of countries throughout Africa, Asia and South America - to be part of this is a true honour and an opportunity to make a real difference. I was also attracted to the challenges that chairing the panel presented. Patient and public involvement is becoming more common in the western world however it is a new and emerging concept in many countries and so to participate in a study that promotes the benefits of having patients involved in your research is really exciting.
Q: The membership of the Panel reflects the international scope of the study, can you tell us a bit more about the background of its members?
A: We currently have representation from Brazil in the form of a public health official and the sister of a patient affected by encephalitis; in India we have a patient affected by encephalitis, the sister of a patient affected by encephalitis and two professionals involved in the recovery and rehabilitiation of patients affected by neurological conditions; in Malawi we have an academic from the University of Malawi and we are currently recruiting for a patient representative there; in the UK we have a parent of a child affected by the condition, the research officer from the Meningitis Research Foundation and also a patient affected by meningitis and sepsis.
Q: What do you hope the Brain Infections Global project can achieve?
A: I hope that we can identify barriers to good practice in diagnosis and management of patients affected by brain infections and that we can provide tools for people to address them, resulting in a reduction in death and disability of patients affected by brain infections in the low and middle-income countries in which we are focusing. I hope we can also introduce the notion and benefits from having patients and public involvement in research studies, in countries that are currently not familiar with the concept.