CLL patient empowerment
CLL patient empowerment – the INAB program
Funding Body: Janssen-Cilag Greece and Gilead Sciences Hellas
Society is faced with a massive health and social care challenge: in addition to demographic changes that will see the proportion of those over 60 years of age rise dramatically in coming years, we will face unmanageable costs associated with the increased prevalence of non-communicable diseases (NCD). This, combined with a global shortage of qualified healthcare professionals, highlights the need to find new ways of managing health and social care.
A paradigm shift described in healthcare indicates that preventive, pre-emptive and predictive healthcare decisions should be made in a pervasive, participatory and personalized manner. It is widely accepted that such a paradigm shift is not possible using traditional tools and processes and requires the patient’s active engagement in the management of his/her own health. Evidently, patient self-management requires novel methodological and technological frameworks, well-designed educational programs that will familiarize patients, caregivers and health professionals alike with the concept of co-decision, its scope and challenges but also its misuse.
We herein envision patient empowerment as a four-arm, iterative process that involves patients, caregivers and health professionals namely physicians and nurses and propose a framework for chronic lymphocytic leukemia (CLL), the most frequent adult hematologic cancer. Οur CLL patient empowerment program aims to engage nurses, empower and support patients and caregivers and promote co-decisions between physicians and patients by establishing a common language and structured ways of communication.
Focusing on CLL, we aim to lay the cornerstone for a novel paradigm in NCDs’ management through patient empowerment for active participation in decision-making by: (i) providing multi-level support to patients and caregivers during the course of the disease; and (ii) designing a special training program to guide health professionals through different disease time-points (diagnosis, treatment initiation, breaking bad news etc) and different behavioral responses (non-adherence, denial etc).
Overall, our CLL-Patient Empowerment framework aims to achieve:
- improved interaction between patients, caregivers and healthcare professionals, facilitating the stratification and active participation of patients in disease management processes
- reinforced medical knowledge with respect to efficient disease management
- increased confidence in decision support systems for disease/patient management
- increased and accurate level of education, knowledge and acceptance by patients and healthcare professionals of ICT solutions for personalized care
- reduced admissions in care institutions as a result of improved disease management and treatment at the point of need
- reduced absences from work for patients as well as their caregivers and improvements in the daily activities of patients
- empowerment of patients towards active participation in disease management, which may possibly inspire them into a more active participation in society as well: more active patients is synonymous to more active citizens, more active professionals, more active parents, more active friends.
The program is supported by Janssen-Cilag Greece and Gilead Sciences Hellas.