International UNIFIED Project Brings Patients’ Voices into Healthcare Decisions

Treatment effectiveness is often assessed using indicators that measure disease progression or symptom severity. However, these do not always reveal how treatment impacts a patient’s daily life and overall quality of life.

“We want to change that. The UNIFIED project combines information on what patients themselves consider important in disease monitoring with data collected by smart devices on patient well-being, while also retaining proven methods already in use,” says neurologist Laura Mäkitie, who leads the Parkinson’s disease pilot within the project.

Goal: Integrating Essential Disease Information

Monitoring chronic illnesses and tailoring treatment individually is often complex. This is true for Parkinson’s disease, which causes a wide range of symptoms. Since there are no biomarkers, assessment relies on clinical examination by a physician. These evaluations must be done in person and are limited in sensitivity, especially in the early stages of the disease.

Remote monitoring devices offer a new way to track Parkinson’s progression objectively, but questions remain: How do measurement results align with disease progression, and what is most relevant and practical for patients?

“In this project, we are working with other professionals to figure out how to combine existing monitoring methods with new remote technologies so that we obtain information that truly matters to patients and develop sufficiently sensitive metrics for use in clinical trials,” Mäkitie explains.

Incorporating Patients’ Perspectives into Treatment Assessment and Decision-Making

The research and development project involves more than 40 organizations across Europe, Canada, and the United States, including universities, hospitals, patient organizations, and companies.

“Our goal is to create international practical guidelines to inform research, drug approvals, treatment recommendations, and reimbursement decisions,” Mäkitie says.

The project focuses on five disease areas: pediatric cancer treatments, lung cancer, Parkinson’s disease, obesity, and juvenile arthritis. HUS leads the Parkinson’s pilot and participates in the obesity pilot. These pilots ensure the model works for both rare and common conditions, in children and adults.

Information for Patients, Healthcare, Industry, and Decision-Makers

If successful, the UNIFIED project will transform how treatment value is defined. Currently, decisions are based mainly on medical metrics such as symptom counts. In five years, decisions will also consider how treatment affects patients’ lives as a whole. For patients, this means treatments that meet their needs are more likely to be approved and reimbursed. For doctors and healthcare providers, it offers a clearer picture of real-world treatment impact. For companies, it clarifies the path to using patient-centered metrics in research. For policymakers, it simplifies resource allocation toward solutions that best meet patients’ needs.

Visit the UNIFIED project page
Read more about the UNIFIED project