Summary of Inspire2live Annual Congres – Amsterdam, 2015
If one would have to recap the congress 2015 in two sentences it would be the following two:
The necessity of breaking barriers for patients could not have become clearer than during this congress. If we want to stop the waste of lives, money, time and energy we have to unite patients into one strong voice, raise consciousness about their needs and accelerate new ways and means to get better results.
In order to achieve this there are some essentials. Like Fred Verdult said: “Part of the solution is also breaking the barriers between patients.” Furthermore we need to identify the groups where the need to raise consciousness is the highest. Maybe the groups that walk through the system as if it makes sense (Stephen Friend). Like the groups that refuse to ask questions and/or involve patients in the decision making process. Authorities, clinicians and researches need to be aware that only a patient can make the decision whether risks and possible suffering are worth it.
The present situation in what way research is conducted has to come out in the open in terms of effectiveness, for instance:
Are patients’ needs answered?
Is it an open research in terms of data and possibilities of contributing?
Can the process be sped up?
Does the research have the possibility to incorporate latest insights during the process?
A well-informed patient is a more powerful patient. But there is even a step before. A well-informed human being might not have to become a patient (in the case of cancer possibly 30%, Nicoline Hoogerbrugge). There is still a way to go in what information gets the floor and how. We all have to realize we have responsibilities in taking care of our body, mind and surroundings. In many ways ‘keeping up appearances make us take better care of the outside than the inside of our bodies.’ (Gaston Remmers). Prevention should be taken as seriously as treatment.
In short, whether you are a lawmaker, a researcher, a doctor, a pharmaceutical company or even press, you should resonate with the population; therefor they should listen to the messages patients send.
Patients can initiate the corruption of denial by embracing and empowering new ways. “Sometimes it is in a great weakness that we find our strength to change the world”, PA Seun Adebiyi said. If there is one group that this applies to it is PATIENTS. Inspire2Live could be the organization that unites them and gives them a powerful inspiring voice. This congress was certainly a step in that direction.