Patient and public involvement (PPI) is defined as research that is carried out ‘with’ or ‘by’ the public and patients rather than ‘to,’ ‘about’ or ‘for’ them.

PPI is thus the active contribution of patients, often with lived experience of a condition, in determining how research is formulated, conducted, interpreted, and communicated.

Epilepsy, which affects over 4000 persons in Malta and Gozo, can have profound physical, psychological, social and economic consequences.

There are still many misconceptions about the condition and this greatly hinders persons with epilepsy to integrate fully in society. PPI can therefore empower persons with epilepsy to participate more fully in policy and research decisions which affect their life.

These were some of the main points to emerge from a Malta Epilepsy Forum organised by the Caritas Malta Epilepsy Association entitled Patient Public Involvement (PPI) in Epilepsy, attended by over 100 participants which included persons with epilepsy and their relatives as well as various health care professionals and policy makers.

The main message from the Forum emphasised that persons with epilepsy should not keep their condition hidden; they should speak out and be more involved in policy decisions which affect their future such as availability of new antiseizure medicines in Malta.

The forum was opened by Mr Frank Portelli, President, Caritas Malta Epilepsy Association with welcome remarks by Mr Anthony Gatt, Director, Caritas Malta, Marie Louise Coleiro Preca, President Emeritus of Malta, Graziella Galea, Opposition spokesperson for Inclusion and the Voluntary Sector and a video message from Julia Farrugia Portelli, Minister for Inclusion and the Voluntary Sector.

The key note talks were given by Prof Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy, Great Ormond Street Hospital for Children NHS Trust, London, UK; President, International League Against Epilepsy and Dr Francesca Sofia from Milan, Italy, President, International Bureau for Epilepsy, who discussed how PPI is being implemented at an international level, such as in interactions with WHO.

The panel discussion focused on the European and Maltese experience in patient public involvement in epilepsy and included the participation of Ms Lorraine Lally, Ireland; Mr Michael Alexa, Austria; Dr Anna Camilleri, VP CMEA Malta; Ms Shirley Maxwell, Epilepsy Connections, Scotland; Mr Matthew Attard, PR CMEA, Malta and Mr Thomas Porschen, Germany.

The Forum was closed by Opposition spokesperson for Health Dr Adrian Delia.

Jo Etienne Abela, Minister for Health expressed his wish for CMEA to forward the report to him in order that the issues raised can be addressed.

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