05 August 2021

5 Reasons why you should work with independent patient advocates ...

A while ago, I wrote an article about the involvement from all patient advocates, representatives from an organization and also those who work independently and its importance. 

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. 

3. Pure engagement and motivated

This people work hard and invest a lot of their own time to learn and to help others and give support. I know a lot of people, including myself, who invest time, work over hours or in their holidays to help others or invest own money to be very educated. We are there and a lot of us very often 24/7, there are no official office hours. This people are very fast and can help to identify needs faster and help better. In addition they can share important information very fast and also bring themes into patients focus. They can strengthen voices.

4. Creativity

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? 

5. Trust

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

Photos: Pixabay.com