Inspire2Live Update – How we patient advocates work

Inspire2Live Update – How we patient advocates work

Posted on Thursday, July 25th, 2019 at 3:41 PM by

A Patient Advocate is an inspired and committed individual with a unique gift to accelerate better cancer prevention, diagnostics, treatment and after care. We meet up to support each other and create bigger impact.

The essence of Inspire2Live (I2L) is bringing together patients, researchers and clinicians to accomplish our mission. I2L is a platform of patient advocates (PA’s): highly educated and committed patients, cancer survivors and loved ones from patients. PA’s are well informed and eloquent. They take the initiative, demand to be heard, and will not sit passively by while decisions made without presence and active input from patients. Others may be medical specialists with tens of thousands of hours of study and experience, or they may be highly qualified managers or policy makers, nobody is more justified and qualified for providing input to decisions than the patient. She and her loved ones have tens of thousands of hours of personal experience. This lends ultimate legitimacy to the patient or patient advocate having a major and decisive role in policy and decision making.

Some time ago a very famous patient advocate joined us: José Carreras. Here you can hear him commit himself tour mission:

I2L is about networking. Our PA’s work individually or in small groups that have defined their own targets. PA’s have an acute awareness of specific parts of the cancer health system that could perform better. This awareness is the source of our motivation to address them. Fueling this motivation is key to I2L. If you just listen to mister Carreras you fully understand why.

Problems that arise and differences of opinions are the fuel for our development. Our PA’s have a highly visible external profile and are present at as many meetings and congresses as possible and tell the audience about our mission and activities. The organization, if possible, facilitates this with the available resources from office management, program management, finance and communications. We work as a group of around 40 PA’s and are not a community of many patients, however lots of patients can and do contact us for help, activism and representation but are not part of I2L.

Meeting time is precious time, in the sense that we can make something precious during our meetings. A meeting is a unique opportunity to leverage and pick the “fruit of dialogue.” Meetings always lead to action. Each PA comes loaded with information, knowledge and questions about her activities to the meetings. All that really matters will be discussed. The essence of our meetings is ‘inspire each other’, ‘inform each other’, ‘get help from each other’ and ‘perform’.

Peter Kapitein,
Ceo and patient advocate

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