The title: Independent Patient Advocates N=not 0, N= many!
You can read it here: Birgits Blog for Data Saves Lives
The message in a short version: Independent patient advocates have a lot to say and they have experience to be an important voice in addition to patient organisation representatives. This independent people have communities in their back, they listen and learn daily. So involve them too. Listen and learn too! They are an important part of the people living with chronic diseases.
Today I want to move forward with my statement and give you exactly 5 reasons why you should involve all patient advocates no matter if they independent ones or not.
1. Networking rules:
This people are great networkers and they know exactly what they are doing. They live very often with a chronic disease, they are blogger or instagram people, they take influence and are directly connected with other patients.
2. High information exchange provided.
They know very clear what the needs, wishes or also hot topics are. This people are informed, they know what they are doing. They ask, listen and learn. They move questions forward to other stakeholders and can help in many cases. They are in the middle of the discussion. In addition: they work hard to change things like healthcare, the systems or also to inform people about news or answer questions.
The patient advocates are creative without end. They think innovative, are mostly one step ahead and have ideas. They share their ideas and they are open minded to discuss and to brainstorm together. They think things different, because they don't have to respect a big regulatory framework. Nevertheless they think very ethical and they know the rules or also laws and work with that very conscious. But: what could be better than a different point of view to generate a holistic picture of the situation and to be able to create something valuable?
Independent patient advocates are seen by the communities as persons of trust, as trustworthy source and supporter. One of the strongest reason to come together and have an information exchange. One of the reasons for this is that they are very approachable, they live with a disease and have experience in living with xx. Like I have in living with MS. So people tend to ask them too.
We are all on the same side, we just work differently and to work differently means too, if people are open minded for it, to find new, maybe better ways to help. It helps us all to learn, to grow and find new systems.
This isn't a competition, we talk about doing things together to help people living with a disease.
And that's what we are here for right?
All my best,
Text: Birgit Bauer / Manufaktur für Antworten UG