November 19th, 2016

EU-IPFF Workshop in Brussels


1st Day

This was the 3rd workshop of EU-IPFF and it was started with a silent minute for Marianne.

Anamaria introduced with a direct-access comparison for secondary care in different countries. She also mentioned sources for rares like RareGAP and Rare Best Practices.

Claudia, an invited guest speaker from HHT Italy, held a long and very motivating talk about the current situation of her patient organisation and the historical path it did run.
Almost all of her experiences and intended goals are also valid for Austria.
We have to concentrate what we are: we are (in the meantime) experts, experts of expertise. Nevertheless, usually the doctors don't listen to the patient - either because they are running out of time or because they listen to a horse, not recognizing the zebara in front of them.
Early diagnose is an important goal, as for almost any other rare disease. Same for distribution of information on the disease on any level of public and helath system (from pharmacy to education).

Cataline told about the situation in Romania (Austria is competing with Romania on the first place of non-smoker non-protection). Some problems are similiar, health system is very different.
She did a short survey on pros and cons for our first contact point on health system. Pros were the properties of a family doctor, cons also indicated a leck of time.

After the break Sam stated after a short question arounf that membership fees do no significant finanzial contribution to our budgets.

Claudia on membership growing and funding.
She told about the switch from support to medic or health system to a patient centered approach (with the example mask first for the adult, then for the child from the plane).
She arose the question What is stopping us?
Her recommendation for any sort of communication was be specific, short term, motivating people. Try to get also people living with concerned ones into the support group.

After lunch we had three different workshops, I attended Recap advocacy essentials. It was a well prepared recap and I'm waiting for the file.

2nd Day

Sam asked about existing cooperation between countries. For my surprise only Germany reported about significant cooperation with Austria.

Patti from the PFF told from an other magnitude of perspective and I love her possibilities to create webinars. She also had a lot of materials with her and gave the advice to celebrate milestones.
Main goals for her activities is also early diagnosis and good care.

Veronika (because Ingeborg already left) gave us some info os the 18 minutes video on IPF produced in Vienna by Focus Patient. The video is on youtube in English and German an shall be translated in some other (east) european languages.

Collaboration beyond IPFF:
Congresses, summits and rare disease day 2017.
Different ideas, e.g. CCC.
Does anyone have a comparison of emergency room costs versus drug costs?
Comparison of systems or operations might help to argue for better support.

Reflections

At last at this point I have to state my perspektive. I'm a little familiar with the situation of an other rare disease - sarcoidosis - and with rare diseases in Austria in common because of my engagement for the national plan on rare diseases as member of ProRare Austria. I'm also a little familiar with developments around IPF because the IPF and the sarcoidosis lectures of the ERS team at least during the congresses of the last years.

Generally I would mark the VeRSORGUNG with medication in Austria as good, up to very good (same or even sometimes better situation as in Germany).
Nevertheless, we share common problems like misdiagnosing (I guess most of the Austrian people with remarkable breath concerns are at a medic because of their concerns, and they are misdiagnosed as COPD (as horse, not as zebra)). Currently there might be a change in the Austrian medical system be arising - away from the GP to PHCs - which increases our work load because PF-patients will have to see a nurse first and she will be the gatekeeper to the next level - GP or specialist - in the PHC.
An other problem we have especially to face around Vienna is the possibility, that the so far from the federal intitution of Vienna held health infrastructure will be privatised in the near future, which is a problem for all rare diseases which are supported in specialized AMBULanzes.
This is our local situation, at least from my point of view.

But now - finally - some remarks from my notes:
We have been talking a few times of information sharing, websites and social media. But we live in a material world, everything we do has to have some benefit (or like Claudia said: check what you try to achieve/have achieved with which action). A lot of people say "why should I join the group - everything I can get is on your website?" - and they state the right question. Usually we have huge volums of information (text and pictures) but only a few lines, why it is important, to join or/and support a support group. Maybe the only valid answer is "because you can and it is important". As (again, who else?) Claudia laid out, the active part of the group will become a family - but thats a process, that begins with a foreigner and might profit from some initial trigger. Any ideas for that - welcome.

IPF around the world: I know the page "Saroidosis around the world" on the WASOG site and I think it is very useless because the content is not "alive". I like the idea to share materials on the web - link to others material on related pages. This works well if this material is in a youtube channel or on the organisations web page - and doesn't change place every few weeks.
Linking with others would eventually be of benefit for groups in Poland or Greek - I will come back to that later.

Im not a frien of social media. Maybe I'm too old, or too slow, or simply want to use the tools I'm used to do. But I captured one of Claudias words - bandwith. To increase bandwith we either have to produce spam or we have to team - team with the right group of ... stakeholders? Better I should say: Similiars.
My declared target is to come home from any workshop with a specific task to do.



(Letzte Änderung: 2016-11-15)
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