Hansis role as ePAG
Background / Intention
My intended role is to campaign and advertise in my home country for the idea of ERNs (whatever that means).
Our National Plan on Rare Diseases (NAP.se, which was the trigger for this kind of my patient advocate activities) ended 2018 silently, still without conclusion or follow up. The main (and felt only) visible task was designation of potential ERN members and APs. Even if there have been some seeds for progress, most have vanished with Covid-19.
For patients our NAP.se didn't change anything, because the designated locations have been places of good practice already before. And there is no additional remuneration or allocation of resources for the dedicated doctors at the designated locations.
But there have been promises for a simple answer to patients: RD patients with problems usually have only one main question - the direction to a good point of service. And the answer (or recommendation) of ERN Lung wasn't really helpful for us so far.
To be honest, the ideas to improve the situation on my Austrian national level are only a few. Finally they are all about ERN Integration to the national healthcare systems - but we need arguments based on referable material for that.
Potential lobbying areas
- Duties of ERN Members/APs
Lobbying for additional remuneration of ERN members because of additional duties is surely a vital topic to prevent dedicated doctors (who do most of the ERN activities as hobby aside of their normal job) from burn out or giving up. Although I have been searching and asking for years, I couldn't manage to find the (common) duties of ERN members/APs somewhere in a manner suitable to be used in discussions with health system officials (and of course: to be published).
Without declared duties all discussions end up in a cloud of warm air and/or in frustration (see editorial of TOW in NL17). - Membership Modalities
In February at our meeting in Frankfurt I was very surprised about the discussion of modalities of ERN members. I didn't hear about relations aside of members and APs before.
This opens a complete new route of participation potentially beneficial for patients. I tried to do a review of ERN Lung publications last weekend (I have a pick list for that) and could not find anything on that but the text and the single link on membership modalities in NL17. - Minimum Standards
This last point is filled from all my frustration collected since years and refreshed this weekend, when I tried to summarize progress and tried to identify promising routes of engagement while reviewing many ERN documents.
As a friend said: "Cases are rare and scattered, expertise is even rarer."
Another formulation of that is "good practice needs case numbers".
Don't get me wrong, I'm not talking about ultra rare diseases, where we could send patients cross border.
I'm talking about RDs with high case numbers, where patient groups still tell that patients need to see an experienced doctor - or mostly a network of cooperating and experienced doctors, but are referred to any doctor.
It is good to hear a doctor giving a talk to patients telling that presentations are difficult and it needs experience and at lot of experienced medical friends around. And it is really completely frustrating when the same doctors (even from ERN lung) give lectures at a congress (or CME) without mentioning that with a single word - even more transporting the message, that any doctor hearing this lecture will make a good job. (And fancy: even without mentioning ERN lung ...)
Of course, there are definitely also strange acting doctors out. For instance: for some rare cases of newborn surgery we have say 5 cases a year in Austria and we do this kind of very high specialized surgery on 6 (!) locations across the whole little country (btw., even 5 cases on one location would be too few and we should act physically cross border).
The problem is, that anyone (also a health system official) can always find a doctor who does the job - because any doctor can do it.
Not only for surgery, but also for lung conditions. Patient advocates really have a hard stand when talking about quality of service and state of the art.
Because there are no communicated/defined/stated/requested minimal standards from experts or societies (for case numbers and care), it is impossible for patient advocates to request better care or even the referral to a local ERN partner, not even for CPMS consultation or physical cross border care.
My Conclusion
Hmmm - hard to say, I'm not sure about. I feel more or less out of business.
Especially as long as ERN Lung transports the message, that any doctor can handle and treat patients with RDs of any presentation,
there is from my perspective neither a need for ERN Lung nor a reason/need for my advocate activities.
Since almost 4 years I'm distributing a quarterly "Expertise News-letter" in Austria, mainly made/edited by two retired pediatrists and supported by all our big RD societies. This year we are really running out of topics, which would be interesting for doctors and health system officials. And so do I with ERN Lung.
PS: In Austria, patients have the right to be treated at the "best point of service". As long as "anydoctor" can do the best service, we are out of luck to get experience.
(Last change: 2020-07-28)