EFNA publish position paper on patient involvement in research

Optimising patient involvement in neuroscience research

Optimising Patient involvement in researchAll across the world, hundreds of millions of people of all ages struggle with neurological disorders daily. These conditions can include Alzheimer’s and Parkinson’s disease, strokes, multiple sclerosis and epilepsy to migraines, brain injuries, brain tumours and neuro-infections. These are in addition to a wide range of rare and neglected neurological disorders. In Europe alone, the death and disease burden due to neurological disorders is staggering and ranks number three among all disease groups, according to recent studies.

Active patient involvement (PI) in neuroscience research, especially in clinical trials, helps ensure that relevant clinical questions and patient-centred health outcomes are addressed optimally. With patient-centricity being increasingly recognised as a pillar of neuroscience research, all stakeholders should push for more systematic and meaningful patient involvement.

This document captures the insights from an EFNA workshop held in Brussels in December 2019. Attended by over 50 representatives of patient and health professional organisations, carers, research and industry partners, and other experts, the workshop served to inform EFNA’s strategic plan for 2020-2025, particularly in its focus area of: Promoting patient empowerment for more meaningful involvement and engagement.

Patient involvement is much more than participation in clinical trials. Patient involvement also encompasses governance and research priority setting, the design of clinical trials and selection of endpoints, involving patients and carers as evaluators and reviewers of research proposals, membership of research consortia and participation in basic research initiatives, etc.