I think it is fantastic that ERUK want to become more patient orientated as a charity. Essentially, they want more people affected by epilepsy to be involved and contribute to their research strategy and funding processes; to develop supporters to be ambassadors; and to develop ways that people with personal experience of epilepsy can influence their wider research activity.
Since I began volunteering at ERUK it has been fascinating to discover more about epilepsy. I have started to understand just how complex the condition is. There seems to be a greatly varied group of patients, with epilepsy being one of the most common neurological conditions worldwide. It can come in many forms but is characterized by seizures, with 65% of patients not knowing the cause of their epilepsy. I have come to understand that many ERUK supporters have been affected by epilepsy and sadly had a family member die suddenly (SUDEP). It is a challenge to try and represent and incorporate all those different groups in a strategy to involve all of them more in the work of ERUK.
Whilst ERUK doesn’t provide direct support to people with epilepsy, they are actively seeking patient input on research priorities and are championing the need for patients to become more involved and invested in research in general.
As well as reading a lot about epilepsy and ERUK, I have also been conducting interviews with staff members. These discussions will assist me with writing a proposal around suggestions which could be put in place to develop a patient engagement programme (e.g. how to recruit, manage, aims, policies, engagement methods, considerations for working with people who have very different experiences of epilepsy etc.).
This kind of work is known as ‘Patient and Public Involvement’ or ‘PPI’. This means an active and meaningful involvement of service users, carers and the public in planning, commissioning, delivery and evaluation of research. In the case of ERUK and it’s activities, this primarily means the research agenda and research funding. In essence, it should include empowering and enabling people with epilepsy, carers and the public to make their voices heard, ensuring that their knowledge, expertise and views are listened to.
A good definition of PPI comes from part of the National Institute for Health Research to support active public involvement in NHS, public health and social care research. “INVOLVE” defines 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.
ERUK believe that ensuring people with epilepsy are informing the remit of the charity is essential. Their knowledge, expertise and views could make a profound impact on research, as well as treatment and management, but also perceptions about epilepsy held by policy makers, government and society.
This a chance for you, people affected by epilepsy, to be involved. You shouldn’t see research as something abstract or distant – this is something where your voice can make a difference.
Look out in the coming months for opportunities to get involved… your voice matters.
-Dr Seonaid Anderson