FT3 member Ivica Belina, President of the Coalition of Associations in Healthcare, says a multistakeholder approach is essential in order to foster a culture of personalized medicine in healthcare
Tell me about yourself?
Ivica Belina – KUZ
I’m the president of Coalition of Association in Healthcare, a national umbrella patient organization in Croatia, which gathers over 30 patient organizations in different disease areas. The organization was founded in 2002 by a group of enthusiasts who wanted to unify and amplify the voice of patients in Croatia. The main activities of the organization are the protection and promotion of patient’s rights, but also raising awareness of patient’s obligations in the healthcare system, promotion of the active role of patients in the healthcare system and in their own treatment, and public policy in healthcare.
In the past four years we have also established a few informal platforms of patient organizations in the field of rare diseases, patients treated with biologic therapy and oncology. My own background is related to work in different civil organizations, mainly focused on people with disabilities, and by education I’m an educational rehabilitator (special needs teacher).
What does personalized medicine mean to you?
I’m guided by the idea that we should treat the person, and not the disease. By that I mean that when a person becomes sick or afflicted with the disease or condition, the whole life of that person is influenced by this, and the entire ecosystem of that person is influenced to the same extent. So I believe that we should approach the patient as a whole, and provide all the necessary levels of support. Of course, I deeply understand the individual differences in the disease in different patients and the way they cope with the disease, and the only way to approach this is through personalized medicine.
Why do you believe this topic is important as a member of a patient organization?
The meaning of personalized medicine is important to me, because if I was ever to become a patient, I could get much more actively involved in the treatment and management of my disease, get much more information on my disease, codecide on my treatment and care programs, achieve better quality of life, help other patients with my data, information and experience, achieve better and closer relationship with my treatment and care providers, get involved in clinical trials… I believe that this is important to all patients.
Why is your organization interested in participating in this multi-stakeholder collaboration? What has your organization been doing in this space?
My organization is always involved in the dialogues between different stakeholders in healthcare, we strive to have different perspectives on problems in healthcare, and raise topics that are not present in the public space. We see the personalized approach as the only way to improve treatment outcomes and quality of life of patients in the existing healthcare environment, but also better working conditions for the people who are professionally involved in healthcare. To achieve this, we need to transcend medicine and the individual roles of the different healthcare stakeholders, and make the leap forward together. Actually, I don’t believe that any positive change is possible without a multistakeholder approach.
What makes this collaboration unique?
The topic of personalized medicine transcends the disease-specific approach, positions of different stakeholders in healthcare and local/national/regional interests. Since this is such a new area, we all need to find a way to bring it to life, so it would become standard in healthcare. The special thing about this collaboration is that everyone involved is there from the start, so no one feels like he/she has been handed with already developed solutions, we are creating them together. Along the way, we are also detecting some problems and issues, but also the ways to solve them. For me, the uniqueness and strength of this collaboration is in so many different individualities working together, challenging themselves and everybody else in an attempt to make personalized medicine our everyday reality.
