Voices Behind UNIFIED: The People Shaping Patient-Centred Healthcare
- Jerina Hoxha
- Jun 19
- 3 min read
Behind every framework are the people who make it possible.
UNIFIED is building a future where healthcare decisions better reflect what matters most to patients. While the project focuses on developing a framework for integrating patient preferences, clinical outcomes, and digital health technologies-derived measures into healthcare decision-making, its foundation is built on people: patients, researchers, clinicians, and advocates working together to ensure that healthcare delivers meaningful value.
To highlight these voices and the perspectives they bring to the project, UNIFIED launched "Voices Behind UNIFIED", a video series featuring members of the consortium and wider stakeholder community who are helping shape the future of patient-centred care.
Each episode offers a personal perspective on why patient-centred healthcare matters and how UNIFIED is working to bring evidence closer to real-world patient experiences.
Starting with What Matters to Patients
The first episode featured Dr. Jorien Veldwijk from Erasmus School of Health Policy & Management. As a researcher specialising in patient preferences and health decision-making, Jorien explained why understanding what matters most to patients is essential for improving healthcare decisions.
Her message reflects a core principle of UNIFIED: healthcare innovation should not only focus on clinical outcomes but also consider the priorities, values, and experiences of the people living with disease.
As Jorien notes, meaningful change in healthcare does not start with methods or models.
It starts with people.
Ensuring Patient Voices Are Part of Research
The second episode introduced Ketiona Malolli, childhood cancer survivor, psychologist, psychotherapist, and patient expert contributing to UNIFIED through Childhood Cancer International Europe (CCI Europe).
Drawing on both professional expertise and lived experience, Ketiona shared why patient and survivor perspectives must be integrated into research from the beginning.
Her contribution highlights one of UNIFIED's central goals: ensuring that patient-centred research is developed together with patients, rather than for patients. By involving those directly affected by healthcare decisions, research can become more relevant, meaningful, and impactful.
Building Research Together with Patients
In the third episode, Bianca Pop, Project Officer at the European Patients' Forum (EPF), discussed the importance of making patient involvement meaningful throughout the research process.
Bianca emphasised that there is still a need for greater clarity around patient preference information and how it can be used in healthcare decision-making. Within UNIFIED, EPF plays a key role in ensuring that patient perspectives, values, and priorities are embedded throughout the project.
Her message reinforces an important shift in healthcare research: moving from developing solutions for patients to developing solutions together with patients.
The Family Perspective in Healthcare
Most recently, the series featured David Porte, Board Chair of Cassie + Friends, a Canadian organisation supporting children and families affected by juvenile arthritis and other rheumatic diseases.
David shared his family's experience navigating healthcare after his daughter's diagnosis with juvenile arthritis and reflected on the importance of listening to patients and families.
His perspective highlights that patient-centred care extends beyond clinical settings. It requires understanding the realities of living with a condition, the challenges families face, and the experiences that often remain invisible in traditional healthcare measurements.
As David explains, when patients, families, clinicians, researchers, and decision-makers come together as equals, something powerful happens:
"It really is unifying."
More Voices to Come
The Voices Behind UNIFIED series will continue throughout the project, featuring researchers, patient representatives, clinicians, and other stakeholders from across the consortium.
Together, these stories illustrate the diversity of expertise and lived experience that drives UNIFIED. They also remind us why patient-centred healthcare matters: because the most meaningful healthcare decisions are those informed not only by data, but by the people behind it.
We invite you to follow the series on our LinkedIn and YouTube channels and discover the voices helping shape a more patient-centred future for healthcare.
