Sarcoidosis patients advocacy - quo vadis?

Dear Jeanette,

it's was Tuesday late evening and we were sitting at the airport waiting for boarding, when I began to write. Now its almost two weeks later and I hope, my remarks are of some use.
And you are free to share my remarks or any excerpt, if you think it is of use.

First - let me say thank you that you invited me to the meeting. It was nice to meet you (already known from mails and the staff picture at ELF), it was a honour to meet Robert (already known from mailings and many publications) and Dominique (only known from some publications and the Orphanet description of sarcoidosis from 2007). It was motivating to be able to say hello to Ginger (I'm not only profiting from FSRs work on education, but also directly because of their research grant for Thomas Weichhart). And it was also delighting to meet the other representatives face to face for the first time or Bernd again after a long time.

We, as patient groups, perform on different levels:
Bottom up from face to face as a motivating source for new patients in a style of "living with sarcoidosis for dummies" over to advocacy to politicans and health system stakeholders on different levels up to incorporating patient perspectives in a guideline development process. We really try to cover an immense spectrum of activities.

But we are not alone. Many other groups of patientes suffer from a different named disease, but have to stand to a high degree similiar symptoms and problems in numerous daily life situations - and we should team in a cooperative and solidly united manner, keeping in mind, that even sarcoidosis might be split into a punch of related maladies with similiar symptoms if we gain more insight into the disease mechanism.

1. QoL matters

But back to topic I - articulation of patient needs for the guideline. There was a request and a raw formulation of demands to prioritize. The more or less direct encouragement for the statement "QoL matters more than an X-ray image" will have a reason. From my perspective, it directly targets to one of the expected core outcomes/recommendations of the guideline: "Treat the person, not the image." A source for the need of this statement might be the configuration, that 16 out of 19 guidline members are pulmonologists. You know the spell: if your tool is a hammer, the whole world is made from nails ... ?

The target of the PAG team from Milano should be the guideline. If there is a request to the PAG to articulate a statement with "whole patients" or QoL on top of the target outcomes, we should simply do that in our role as patient representatives. If we could not speak or would not want to speak for our groups in general, we shouldn't be delegates at this place. There is neither a need for a scientific survey, nor a reason for a broader survey with many patients. We already know patient needs from daily contacts and some of us have even done surveys in that field. Even Bernd writes in a call for an ongoing survey, dated the day after our meeting: "... there is more to be considered than the lung function".
There is also no argument for additional democratic legitimation, because even our organisations in the individual countries represent only a few percent of patients - far away from "representative" (but hopefully enough to advocate).

So please encurage either the 3 PAG representaives to do a coordinated statement or let us do a tiny survey from the PAG countries representatives - the result should be the same. As Robert said, everything else would be very surprising in our circle.

2. Lay summary

Yes, from my point of view there is a demand for a lay summary. Not only one for the patient, but also - or even primarily - targeted to health system stakeholders. You know, I'm from the country Gustav Mahler said about: "If the world will end, I will relocate to Vienna, because there everything happens 50 years later."

The core messages I hope to be able to extract from the guideline are

It would be very helpful to have such a statement on an official site (like on the WASOG pages) - maybe it is simply a subset of criteria for Robert's WASOG Sarcoidosis Clinics?

For patients the core answer for treatment is the name of the physician, who cares for the patient and organizes all the friends around him. In Austria we have only one place with a more or less decleared leading physician (from internal medicine), who cares and organizes, regardless of the actual organ specific patient presentation. But this should be the standard avoiding further patient odysseys, false diagnoses (positive and negative) and treatments.

3. Resources on the internet

During the last decade there emerged numerous resources on sarcoidosis education on the internet (I can read only german and english).

Foremost there is FSR, which did recently a huge step forward for the community with the page On-Demand Educational Content.

There are also a lot of very advisable videos (mostly FSR, WASOG and AASOG) on the internet, you can find a small selection on my old youtube playlist sarko.at.

There are also some other resources from conferences or webinars. Unfortunately some of these care for their expiration date and have been removed without prolongation, e.g. the presentations from the WASOG conference 2012 formerly hosted by the Cleveland Clinic (this hurts, because it was the more or less first broader presentation of SFN and not so common neurological symptoms available to the public).

You can find a selection of english and german contents on my multimedia links page. The linked topics cover leading edge education up to case presentations on TV and selfmade patient resources on youtube.

The only german language, free available sarcoidosis resources from patient organizations have been created and are hosted by SSARV in Swizerland. They cover a large range of target audiences - from medical education up to Dorrit's sarcoidosis from patient's view (Medizinische Infos).

Recent printed sarcoidosis resources in german are available from the german Sarkoidose-Netzwerk. These are basically summaries of high-class presentations for patients (usually 1/4 of listeners at these presentations are from medical staff). You can find the cover pages and the name of the main contributors of the periodical member magazine here.

The reason for this enumeration is, that I can hardly see a high demand or significance of an additional pool of english resources on the internet.
Please, don't get me wrong: we should share everything. But most resources we create for us ourselfes (e.g. case descriptions as text for advocating) have a high degree of event and country specific content, or are only appropriate at a specific moment or a distinct provocation.
And to be honest: I have nothing special to share - all I have are the links/is the contents on web page and everything is free to use for others.

For the final disillusionment: periodically I try some advertising for resources on sarcoidosis, e.g. recently for the videos accompanying FSR's Sarcoidosis Awareness Month 2017. The frustrating thing is, that click/view rates from Austria for non-german language resources seem to be *very, very, very* low.


Best regards from Austria,
Hansi



(Last Change: 2017-09-24)