Just coming back from the European Health Forum Gastein 2014, I would like to share my experience as a Young Gasteiner. The programme was a great opportunity to come in contact with many young people who are active in public health all over Europe (healthcare professionals, researchers, representatives from NGOs). I learnt a lot from our discussions and I’m happy to be part of this vibrant network, overall as it is the first time that patients’ representatives are involved.

While the whole conference was interesting, what I found the most enlightening is the Cross-Border Healthcare workshop which was held with young gasteiners. We reflected together on many solutions to key issues in the implementation of the directive. My group focused on continuity of care between the home healthcare professional and the doctor visited abroad. We recommended electronic health records with some degree of harmonisation would be a key tool for exchange of information. And empowering patients is also key to ensure the information flows.

Another session that I particularly liked was on Health System Performance, because it is such a prominent topic, and I now grasp the concept and its potential, which will be very helpful for my work. I think this is a key area where patients need to be engaged because the questions of access, patient centred healthcare, and quality of care are at stake.

I heard other interesting ideas at Gastein. Former MEP John Bowis in particular proposed to focus our efforts on the health literacy of decision-makers. And Ilona Kickbush presented the idea of health citizenship which means in a nutshell that citizens have rights in the context of healthcare, and should also have opportunity to take responsibilities.

A part that resonated strongly with me is the speech of Dr Agis Tsouros from the Word Health Organisation who explained that “health is a political choice”. He argued that if we have health inequalities in our society, this comes from decisions made by politicians who can chose to ignore a problem. Working on the question of access within EPF, I know that we will do our best to ensure that decision-makers work towards the right solutions.

I was glad to recognise some fellow patients’ representatives within the ranks of the Young Gasteiners, namely from our membership, Roberta Savli from of the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA), Elisabeth Kasilingam of the European Multiple Sclerosis Platform and Anne-Marie Borg from Malta Health Network . I believe the next step will be to involve young patients with chronic disease themselves, for instance from EPF Youth Group. Patients are experts too, as was acknowledged several times during the conference.

The European Federation of Neurological Associations (EFNA) launched “Stronger Connected” – a guide to building national neurological alliances – at the Advocate for Brain, Mind and Pain Workshop on 24-25 September 2014 in Brussels. We took this opportunity to know more about our member’s efforts to create alliances at national level with an interview with its Executive Director, Donna Walsh.

What do you want to achieve with these alliances?

Neurological alliances bring together organisations working on a wide range of neurological issues, such as multiple sclerosis, epilepsy, stroke and many more. Groups with similar interests can be heard as a collective voice for greater impact. Being part of EPF is of huge importance to EFNA. As an organisation with just two staff persons, we do not have the resources to be active in every aspect of healthcare debate and decision-making. EFNA can then more easily contribute from our more specific angle to EPF patients’ perspective which is a real benefit to us in terms of being efficient in our work and not duplicating effort. Speaking with one voice also means that patients are more likely to be heard.

Why have you decided to create national alliances?

EFNA is launching a Member of the European Parliament (MEP)’s Interest Group on Brain, Mind and Pain in 2015. For this group to be optimally effective we need to build an efficient channel of communication to the national level through which we can see the real impact of EU decision-making on neurology patients. We also wish to empower these groups to help us in reaching out to their national MEPs, tabling issues for our agenda and disseminating the results. Only a handful of alliances exist today in Ireland, the Netherlands, Poland, Scotland, Spain and the UK.

How does it work concretely to create an alliance?

EFNA will not set rules on how an alliance should operate. Stronger Connected is a collection of experiences from existing alliances which should inspire and encourage national patient groups to work together on issues of common concern. A formal channel would involve a registered National Neurological Alliance in an EU Member States which becomes an Associate Member of EFNA. As the process will take time, we will link in with active patients’ advocates or clusters of national patients’ organisations who may be cooperating nationally without registering as a non-profit organisation.

What are the challenges EFNA is facing to create those alliances?

The main challenge is the lack of resources, in terms of time, personnel and – of course – funding. Even existing alliances struggle in this regard. However, lots of solutions were put forward to overcome these obstacles and with committed organisations involved, we are confident that we will see new alliances in future even if we know it will take time.

If you are a representative of a national neurology patient organisation in your country and would be interested in working with EFNA to build an Alliance, contact: executivedirector@efna.net.