Report: EFNA’s Stronger Connect Workshop 2024

Workshop Report Stronger Connected 2

REPORT: EFNA’S STRONGER CONNECTED WORKSHOP

April 5TH 2024

Download the presentations here

On April 5th, 2024, in London, UK, EFNA and our member organisations gathered for the second annual Stronger Connected Workshop. This year’s workshop focused on Strategic Objective 3 of WHO’s 10-year intersectoral global action plan on epilepsy and other neurological conditions and how it can link to Strategic Objective 1 and raise awareness of neurological conditions. 

EFNA’s Executive Director, Dr. Orla Galvin, opened the session with a concise review of the outcomes of the first Stronger Connected Workshop. She emphasised the crucial role of patient advocates in supporting the IGAP and fostering synergy among stakeholders, particularly in relation to Strategic Objective 3 of the IGAP, specifically to delay or prevent neurological conditions where possible and promote optimal living for those affected by neurological conditions by supporting brain health.

EFNA’s Senior Policy Advisor, Tadeusz Hawrot, set the scene by reminding attendees of the impact and burden of neurological conditions and the opportunity we as patient advocates have to utilise the policy hook of the WHO’s IGAP, the Healthier Together EU Initiative of Non-Communicable Diseases, Joint Partnership on Brain Health and the upcoming EU elections. He reminded attendees to support EFNA’s EU Elections Manifesto and utilise the array of supports available within the EFNA EU Elections Toolkit, including template letters and contact information for candidate MEPs, key messages, prepared social media messages and graphics.

Attendees were invigorated by the presentation from Dr Agne Straukiene, (Torbay and South Devon NHS Foundation Trust, UK; Host and Founder of BeewellwithMS podcast). Her presentation “Setting Priority for Brain Wellness: Innovative Strategies from MS Healthy Lifestyle Clinics” showcased how taking a holistic and integrated approach to treating and managing life with a neurological condition can yield significant benefits for both the treating clinic and the patients. Improvements in medical outcomes and overall well-being can be achieved with the underlying message of “what gets measured gets managed”. The room was energised as the potential to scale up this work, and replicate it in other condition areas was widely recognised.

An innovative approach to patient and caregiver empowerment was presented by Harris Eyre, MD PhD, Fellow in Brain Health, Rice University’s Baker Institute for Public Policy, whose presentation on “The Brain Economy is an Inclusive Economy” highlights the economic potential and added value the brain capital of neurology patients and caregivers could yield if harnessed and if patients could live optimally with their neurological condition. An article written by Harris on this topic is available here.

Another wave of innovation was presented by Emerson CabralDirector, Patient Advocacy Lead Neurology and Meta+, Alexion Pharmaceuticals Inc., this time in awareness-raising. A highly emotive video provided an example of how to relay and express the lived experience to others. Three patients wrote letters outlining their lives with a rare neurological condition. These letters were then shared with each other. Recognising the isolation, the struggles with progressive flare-ups, and living in fear of what would happen next, the connection patients felt for each other was evident. 

Attendees agreed this was a useful digital tool to raise awareness, highlighting the power of truly understanding the lived experience and the importance and value of peer-to-peer support. Attendees also gained insight into living with another neurological condition through a virtual reality system depicting Myasthenia Gravis.

The group discussed issues facing each of the neurological conditions represented by EFNA. The many devastating impacts of living with a neurological condition were not just the conditions themselves but the stigma, discrimination and isolation experienced in schools, in the workplace, and social settings, including with police forces. It was agreed that a clear need exists to improve understanding and awareness of neurological conditions.

The afternoon session allowed attendees to work together, reflecting on what makes a good awareness campaign. It was agreed that memorable campaigns were usually found on main-stream media, and across platforms, many had the support of someone famous, with a memorable tune/song, a striking image, and were relatable to the general public.