Citizen Participation
Overview
IMPaCT’s mission is to establish and transfer the necessary knowledge to support and facilitate the effective deployment of Personalized Precision Medicine, which will mean a paradigm shift and a new reality for the health system, allowing a more effective and safer preventive, diagnostic and therapeutic approach for each patient.
To give examples that help visualize the importance of Personalized Medicine, and those who can be the great beneficiaries we have patients with rare diseases, most of them without cure or treatment, in the future they will be able to enjoy more health through gene therapy.
This is already happening in the treatment of oncological diseases with new gene therapies and immunotherapy that help patients fight tumours (for example in breast cancer, melanoma, leukaemia or lung cancer) more effectively thanks to precision medicine.
Another important aspect linked to citizen participation is to better understand the biopsychosocial reality of people through the collection of their genetic, phenotypic and environmental information.
This will improve the prediction and prevention of diseases, and achieve a more proactive health system, with population data that helps to make the best decisions, both from the field of personalized medicine and public health.
At IMPaCT, citizen participation incorporated from its design is key to the definition of strategies, development and communication, and it is essential that everyone can contribute to the health of the future through open science: accessible, efficient, democratic, transparent and dynamic, in which both scientists and society participate.
We must ensure that scientific development really benefits citizens, patients, and for this we need a closer connection between research, the needs of society and the integration of patients’ vision.
IMPaCT has included in its governance a Citizen Participation Commission in which the Platform of Patient Organisations (POP) and the Spanish Federation of Rare Diseases (FEDER ) participate on behalf of patients, in order to incorporate the vision and priorities of society in IMPaCT’s actions, develop recommendations and define communication strategies that contribute to publicizing advances and results of Precision Medicine to the public.
To achieve this, we want to work with patient, consumer, and other social entities.
IMPaCT wants to establish channels of communication with citizens, in order to enhance their effective participation, knowledge and contribution.
To this end, communication and public awareness campaigns will be developed.
IMPaCT has included in its governance a Citizen Participation Commission in which the Platform of Patient Organizations (POP) and the Spanish Federation of Rare Diseases (FEDER) participate on behalf of patients. In order to incorporate the vision and priorities of society in the actions of IMPaCT, to develop recommendations and define communication strategies that contribute to publicizing advances and results of Precision Medicine to the public. To achieve this, we want to work with patient, consumer, and other social entities.
Through the IMPaCT website, detailed information on the development of IMPaCT’s three strategic axes can be found: Predictive Medicine (COHORT Program), Data Science (DATA Program) and Genomic Medicine (GENOMICS Program).
