In 2016, EFNA launched its Training Initiatives for Neurology Advocates [TINA].
For many years EFNA has run workshops on Health Technology Assessment and, lately, Pharmaceutical Policy – Pricing, Access and Reimbursement at the London School of Economics.
However, feedback from participants indicates that patients now need to be equipped to use the theoretical knowledge gained on these processes, and the wider research and development cycle, in a more practical way.
For example, through the development of communication, advocacy and campaigning skills and the generation of patient evidence or patient reported outcomes.
EFNA is also eager to ensure that our training activities are targeted to the neurology sector and the specific obstacles faced therein.
Working with other stakeholders in the field e.g. neuroscientists, neurologists, industry, regulators and payers is part of our envisaged way forward.
Under TINA, EFNA plans to run at least three workshops annually for neurology patient advocates at both a pan-European and National level.
Get in touch if you are interested in:
- Suggesting your country as a location for a national workshop and supporting us locally
- Suggesting a topic for an upcoming workshop
- Participating in an upcoming event
- Coming on board as a sponsor
- Any other aspect of the initiative
An EFNA-commissioned report into neurology patient engagement in Health Technology Assessment has shown uncertainty in how the provision of a patient perspective impacts final decisions.
The report concluded that further research involving patients and other stakeholders is needed to gain a better understanding of patient groups or patients with neurological disorders can improve the HTA decision-making process.
Read more here
Brussels, May 2017:
Effective External Ambassadorship
Download slide deck here
Dublin, October 2016:
Putting the Neurology Patient Perspective at the Heart of Research and Beyond
Focus on Patient Generated Evidence and Patient Relevant Outcomes
Download presentations here
Warsaw, December 1st 2017:
How to Become Your Own Advocate
Workshop for Polish patient organisations representing those affected by brain disorders
Valencia, October 26th – 27th 2017:
Understanding and Influencing Healthcare Decision-Making
Focus on: Health Technology Assessment
Bucharest, July 21st 2017:
Utrecht, The Netherlands – November 2016
Bucharest, Romania – October 2016
This initiative has been made possible through unrestricted educational grants from the below sponsors, who have had no direct influence over the final agenda – including the selection of topics, speakers, case-studies, etc. The objective of this meeting is to upksill neurology patient advocates to participate in the R&D process and beyond – and the outcomes will be disseminated in an appropriate manner to allow for this objective to be met.
Thanks to Biogen, Merck Serono, MSD, Novartis, Pfizer, Sanofi-Genzyme, Teva and UCB.