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PATIENT CANCER NAVIGATION JOURNEY. Patients’ University 2008. During March 2006, the Joseph Laporte Foundation (FJL) and the University Autonomous of Barcelona started the Patients’ University Project. It is a monographic university that has four main areas of interest: information,
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PATIENT CANCER NAVIGATION JOURNEY Patients’ University 2008
During March 2006, the Joseph Laporte Foundation (FJL) and the University Autonomous of Barcelona started the Patients’ University Project. It is a monographic university that has four main areas of interest: • information, • education, • research and • counseling focus on patients and caregivers needs.
In December 2007, Patients’ University Project has been given an international grant by AMGEN International and United Way International to develop the Patient Cancer Navigation Journey project.
I. Background During the last years FJL has carried out many research project on cancer patients and caregivers, in collaboration with cancer patient’s associations, cancer volunteers organizations and national and regional health government departments. • “El Paciente Oncológico”, 2003 (www.fbjoseplaporte.org)*, • “Libro Blanco del Paciente Oncológico en Catalunya” (in press)*, • “Evaluación de la Calidad de la Asistencia Oncológica en España”*, 2008 (http://www.universidadpacientes.org/docs/libro_oncolog.pdf); • “El Valor Terapéutico de los Tratamientos Oncológicos: la perspectiva del paciente” (in press)* * Only available in Spanish
I. Background The results evidence that patients are satisfied about medical technology and technical assistance but they have specifics demands on: • understanding the disease, • day-to-day living as a patient, • navigating the health care system, • emotional and social concerns associated with coping with the illness
Sometimes, health care system, may seems like a maze
II. Goals of the project Patient Cancer Navigation Journey must be a ROADMAP to help cancer patients, families and volunteers better navigate health care system and cope with the differents stages of the medical care process.
III. Objectives of PCNJ • Preparing cancer patients and families for their cancer journey, providing information and education about the disease; • Promoting an active patient participation in treatments plans and in the decision making process; • Enhancing the collaboration between patients, and between patients and volunteers; • Empowering volunteers and patients organization to participate in the health care process, in collaboration with health care team; • Motivating a better use of available resources to reduce inequalities in the access to care and the lack of continuity in health care; • Providing practical resources such as: audiovisuals, toolkits and a web site, to facilitate navigation.
IV. Framework The program is divided in 5 ports that simulates the differents stages of the illness: 1st Port: Understanding the disease 2nd Port: Navigating the health care system 3rd Port: Coping the illness 4th Port: Back to regular life 5th Port: Helping others
Every port has the following resourses: • A web site with information and interactive multi media resourses • Specific video and TV programs • Education projects • Toolkits • Patients and families specific publications
V. Implementation stages • Establishment of a Project Advisory Committee with the mission of supervising, auditing and advising. It includes: • Cancer patients and families • Cancer patients and volunteers organizations • Scientific societies • Hospital care, primary care and departments of health
Join us! It would be a exciting experience. Visit our video at http://www.universidadpacientes.org/video/ (only available in Spanish)
Patient Cancer Navigation Journey Joseph Laporte Foundation Barcelona - Spain Tel. (+34) 93 433 50 20 Fax. (+34) 93 433 50 36 universitatpacients@uab.es www.universitatpacients.org