As part of our Training Initiatives for Neurology Advocates [TINA], in 2019 we will coordinate a meeting to explore the topic of ‘access’ with a focus on HTA. We will begin with a broad exploration of the challenges faced by patients in access to treatment, followed by a look at the obstacles in the neurology domain – based on the Value of Treatment White Paper of the European Brain Council.

A workshop will then take place to give participants an opportunity to discuss specific access challenges in their countries/disease areas – but also successes. They will be tasked with reaching a consensus on the main barriers to access, and to think about where the European neurology patient advocacy community could mobilise and act, with an opportunity to see tangible outcomes. These suggestions will then be discussed by a panel of expert stakeholders to give the group insights into how this advocacy/policy work could be moved forward effectively.

On Day 2, the focus will move more to HTA when participants will be asked to consider whether current work on pushing for more patient engagement and/or reform of HTA systems is a worthwhile use of resources in relation to improving access to treatment. A presentation of EFNA’s research in this field will be provided, followed by a series of perspectives to contextualise the discussion.

To end, participants will be tasked with drawing up an interactive roadmap for neurology patient engagement which would lead to improved access for all. This should be based on the issues identified and suggested solutions discussed over the two days, and should align with other initiatives already ongoing in the field – such as the Patient Access Partnership, which will be presented as an example of good practice.

All learnings from this workshop will be encapsulated in a report and subsequent advocacy tool, created by colleagues at the European Alliance for Patient Access with whom we will collaborate on this event.

This will link with EFNA’s advocacy work via its MEP Interest Group on Brain, Mind and Pain in which ‘ensuring equitable access to treatment, services and supports’ is one of the three thematic areas for the political mandate of 2019-2024.