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. When we really want to change research and treatments for patients, we have to set up cooperation with researchers and clinicians. Our vision: https://inspire2live.org/wp-content/uploads/I2L-PA-Vision-Document1.pdf
I2L is about networking. Our PA’s work individually or in small groups that have defined their own targets. Several times a year we discuss the themes that we share, but it is essential that each PA is able to determine her own goal and means to reach that goal. Why? 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. We use our talents and potential and contribute to it to the best of our possibilities. We align with each other’s purpose and activities where we can. 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.
The PA’s meet face to face, in conference calls and so on. The meetings are between two or three PA’s or larger teams. When we meet as a group, we invite a keynote speaker to increase our overall knowledge and spark discussions on specific themes. After that we take some time to inform each other and to ask for help. Meetings take place on the basis of a strict and clear structure, with room for initiative and influence of all PA’s.
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’.