Why Are Adolescents and Young Adults Special Patients? (Ivett Jakab)
Adolescents and young adults are a specific group of patients: this period of growing up is sensitive by definition. Adding changes such as the transition from pediatric to adult care further increases the level of vulnerability of these patients.
The strong point of the group, however, is strong digital literacy. This is an opportunity for digital health innovations.
During the 26th and 29th of October speakers from across Europe and organisations such as WHO, German Federal Ministry of Health, European Medicine’s Agency, EIT Health, BMJ and more are going to discuss the state of digitalization in Europe, with a heavy focus on the patient perspective.
The European Patients’ Forum is organising a Congress to assess the state of healthcare digitalization in Europe. The topic will include patient data sharing, the role of mobile health and digital therapeutics, how to increase partnerships between patients and doctors, cross-border healthcare, co-creation, patient empowerment and more.
The event will be co-hosted by Ivett Jakab, the president of the European Patients’ Forum’s Youth group.
Jakab was diagnosed with a rare disease called Wilson’s disease at the age of 16 and underwent a liver transplant as a consequence. In this episode, Ivett shared her story, the meaning and power of the EPF Youth group and why are people between 15 and 29 an underserved group of patients?
EPF Youth Group
The EPF Youth group currently counts nine members, and is running an open call for new ones. Patients from across Europe are in this group to advocate for the age group specific challenges. When patients transit from pediatric care to adult care, they step into a vulnerable period of their disease management. “There's a transition from your mom taking care of your medicine and managing your disease to you becoming independent, going to another care unit, being treated by new doctors. Being a teenager and a young adult is very vulnerable in itself and this transition makes this period of the lives of chronic patients even more sensitive,” says Ivett Jakab.
Risks in the age-group of adolescents and young adults
Explaining further, adolescence is a time of engaging in risky behaviors and testing the limits. “This transition period is really risky in terms of adherence. It can happen that patients stop taking steroids because they hate how steroids make their faces look. If you don't give them enough support those with organ transplants can lose their organ due to nonadherence. I know of a patient, I think he was around 17 or 18, whose mother died very suddenly. The father just couldn't take over managing his son’s disease. So the patient stopped taking medicines regularly and he lost his kidney. There's a huge need for supporting patients in managing their disease,” elaborated Ivett Jakab.
The knowledge and power of patients
The powerful characteristic of the young patients is their high level of digital health literacy. “So it would be really worthwhile to specially invest into con coming up with digital technology for these people,” Ivett Jakab says.
Looking at the programme of the EPF Congress 2021, she is most looking forward to the session “Patients as co-designers and co-innovators: between theory and practice”, which will take place on 28 October.
As Jakab explains, patients can be more than just participants, they could be engaged in the development of technology or even initiate the development. “That is showing us a really bright feature on how patients can be really helping and how technology developers can help patients to come up with solutions that are answering,” concluded Jakab.
Join the EPF Congress 2021.
Additional resources:
To learn more about the EPF YG: https://www.eu-patient.eu/about-epf/about-us/Youth-Strategy/
Young patient employment project (WAYS) results: https://www.eu-patient.eu/about-epf/about-us/Youth-Strategy/ways/
Contact the EPF YG via youthgroup@eu-patient.eu