The economical stigma when living with a disease and being an expert!

by Birgit Bauer 

A while ago I found and shared that article in my social media channels. It discusses how words can stigmatize people living with illnesses and / or disabilities. It says, that there is a stigma in wording what shouldn’t be. https://www.readersdigest.co.uk/inspire/life/the-way-we-talk-about-disability-matters

Once you become a patient, very often you lose your identity as a person for others. You become a case or a number, especially in hospitals etc. Being a “patient” can be very stigmatizing in general. Because if it has been said once, people start to think very different and very often you are packed in a box of misconceptions and prejudices. The diagnose of a disease changes a lot in the life and the professional life of a person, it’s challenging to let people know that you are still there, the person not defined by a disease. There are many words stigmatizing people, but stigma is much more. 

Also in an economical way ... 

 

When a meeting feels uncomfortable - public complain or constructive thinking?

It can happen. You are invited in a meeting. 

As Expert in a specific area, as panelist or as member of an advisory board. 

You prepare as good as you can, you dial in in time and you are present to contribute with valuable information whenever it is possible. 

Because those meetings, especially online meetings live from their participants. From the lively information exchange. This must be well prepared not only from the participants also from the organizing team. 

Preparation Materials must be provided in an adequate timeframe to invited people and also inform them about the tool which will be used. It is essential to bring everything together, team, speakers or panelists and materials.

Moderators have to prepare themselves too. They have to know what the needs and goals of the meetings are and the themes the group should discuss. It is about leading, time keeping, having a look at the chat for further comments and incoming questions. Another person is responsible for a protocol and maybe for moving the slides forward. 

Every single job in this field is a hard one. No matter if you come as participant or as Organisator. Every single event means a lot of work, preparation and organization. 

About silos and how to build bridges in digital health!

It happened again as so often in digital health: An experts group made a decision. Just the exeperts. 

No other group was involved. No voice of patients, carers, HCPs or let me say it very simple: citizens weren't heard or involved in that decision. No one asked if the decision works for them. 

Again one of the things I call a "Silo decision". Some people made a decision and the rest of the people have to live with it. It was not asked if this decision is feasible for them and their lives. They have to live with it. 

Of course, some decisions must be made by a small group of people, they are the experts and the representatives of a country or an expert group. It is their job. I understand it. 

But in my opinion they have to listen and do understand the people they make the decision for. To make things trustworthy, clear, transparent and understandable. Or short: useful. Worth to use it. To give it a try. 

Especially in the area of digital health I can see a lot of silos. We still discuss but mostly there is not the public debate or discussion we would need to create a digital health system what is used by people. Because they see the benefits and are open minded. 

Digitale Gesundheit - Welten zwischen Experten und Patienten und warum wir bessere Infos brauchen!

Wenn es um Digitalisierung im Gesundheitswesen geht, lebe ich in verschiedenen Welten. 

In der Expertenwelt, in der die Fachbegriffe nur so hin und her fliegen, in der ein inspirierender wie spannender Austausch passiert. 

Die andere Welt ist schwieriger. Es ist die Welt der Patienten und Bürger. Es ist eine Welt, in der digitale Gesundheit oft ein schwergängiger Begriff ist. 

Während ich auf der einen Seite flüssig über die ePA parliere, über Interoperabilität diskutiere und mir nebenbei noch Gedanken über DIGA mache, ist da in dieser anderen Welt längst Schluss. Gesprächspartner weitergezogen. Oder ausgestiegen. 

Der Grund dafür ist ganz einfach: Viele Menschen verstehen nicht, was Digitalisierung bedeutet. Reden wir über das Gesundheitswesen, das digitalisiert werden soll, sind viele von diesen Menschen raus. Es herrscht Erklärungsbedarf, weil das Verständnis fehlt. Oder, und das ist wichtig zu wissen, der Mensch ist gesund. Dann fehlt ab und an das Interesse. 

Dennoch entsteht daraus ein Vertrauensverlust und aus diesem oft eine starre Verweigerungshaltung, die sich in allen Gruppen findet, die mit dem Gesundheitswesen leben oder gar darin arbeiten. So gesehen: Digitalisierung betrifft uns alle.