In recent months, discussions on brain health have much focused on how to bring brain research and brain health on the European agenda. Patient organisations have also been very active in bringing their views to the discussion. However, we increasingly find that in relation to research in brain health and innovation, patient involvement has not been not optimally represented and relatively little impact on patient care and diagnosis can be seen.
The patient community needs precision medicine, in prevention and diagnosis, of brain diseases. Neuroscience, neurology and psychiatry must more closely align and transform their framework as the field of oncology has done.
Three leading European patient organizations in the field, Alzheimer Europe, the European Federation of Neurological Alliances (EFNA) and GAMIAN Europe, have come together to organise a meeting that will underline to the brain health community why engaging patients in the discussion on brain health is crucial.
The meeting will present a call for action in anticipation of a possible brain health summit and – later – a brain health partnership. We will emphasise the importance of engaging the patient community in the discussions on brain health, with the overall goal of bringing people from the entire community together, outlining what our organisations hope to achieve, and most of all raising awareness of this important matter.
In order to safeguard the future of brain health it is:
- Essential to systematically align all agendas in order to work towards agreed-upon commitments to the brain health agenda.
- Imperative that all stakeholders ensure that the priorities, needs and expertise of all those living with Brain Health disorders are considered and included.
- Important to make sure research is intrinsically connected to reality.
As representatives of people living with brain health conditions, we must fight to ensure the voices of patients are heard.