We participate in research programs aimed to improve quality of life of patients
Patient Centric Research
We participate in research projects to understand how patient engagement might impact quality of life of patients. Over the last years we have worked with several universities and research organisations to increase our knowledge aiming to identify and understand the drivers of patient empowerment for specific patient populations.
Driving patient empowerment
Understanding drivers which fuel patient empowerment might help the research community to come up with novel initiatives to assist patients in their patient pathway. These drivers will depend on context, patient profile and therapeutic area, including healthcare system. Together with our research partners, we aim to understand these drivers better to ultimately improve patient outcomes.
Input for optimizing a clinical trial design
We evaluated a clinical trial protocol for patients with psoriatic arthritis to understand the trial burden and relevant end points to consider that reflect the patient needs. This project recruited over 30 patients in USA and Belgium.
End of life care – iFocusprogram (funded by EU)
The overall aim of this project is to evaluate the effectiveness, cost-effectiveness and mechanisms of action of two psychoeducational interventions (a face-to-face nurse-led intervention called FOCUS+ and an eHealth intervention called iFOCUS) aimed at improving the emotional function and self-efficacy of patients with advanced cancer and their family caregiver. Both interventions are compared to care as usual.
Current research projects
Digital Health Tools for Managing Noncommunicable Diseases During and After the COVID-19 Pandemic: Perspectives of Patients and Caregivers
Background: A reduction in the number of face-to-face medical examinations conducted for patients with noncommunicable diseases (NCDs) during the first wave of the COVID-19 pandemic has led to health care professionals quickly adopting different strategies to communicate with and monitor their patients. Such strategies include the increased use of digital health tools. However, patient preferences, privacy concerns, a lack of regulations, overregulation, and insufficient evidence on the efficacy of digital health tools may have hampered the potential positive benefits of using such tools to manage NCDs.
Objective: This viewpoint aims to discuss the views of an advisory board of patient and caregiver association members. Specifically, we aim to present this advisory board’s view on the role of digital health tools in managing patients with NCDs during and after the COVID-19 pandemic, and to identify future directions based on patients’
2018 — 2021
Multidisciplinary Oncology Consultations
Multidisciplinary Oncology Consultations using Patient-centric Decision Support: Beyond Black-Box Systems
The project aims to improve cancer disease management, by targeting a principal decision-making instrument employed in current oncological care: the multidisciplinary oncology consultation.
The rationale for our approach is that to be relevant in multidisciplinary oncology consultations, clinical decision support systems should be multi-factorial (based on data coming from multiple disciplines), easy-to-use (allowing it to be integrated in the clinical workflow), and understandable (allowing interpretation for both the healthcare professional and the patient). The project is funded by the Brussels Institute for Research and Innovation (Innoviris).
The project consortium consists of six Brussels research groups and two companies. The research groups are from medical, engineering, psychology and business departments of Brussels universities.
Oral Corticosteroid Use for the Treatment of Chronic Eosinophilic Disease: A Patient’s and His Physician’s Experience
This article, coauthored by a patient with eosinophilic granulomatosis with polyangiitis (EGPA) initially presenting as severe eosinophilic asthma and his physician-specialist, discusses the use and management of oral corticosteroid (OCS) treatment. It also considers the importance of early diagnosis of a rare disease and patient education. The patient describes his journey from progressive worsening of asthma and eventual diagnosis of EGPA to long-term OCS treatment and then participation in a clinical trial for this rare disease, involving the introduction of targeted biologic therapy with OCS tapering. The physician describes the importance of patient referral to obtain a correct diagnosis and optimal maintenance treatment, the balance between risk of adverse events associated with long-term OCS use and benefits of disease control, and various aspects of patient participation in clinical trials. Finally, the patient describes the role of continual patient education in the management of disease and OCS treatment. These considerations can apply to all chronic inflammatory diseases requiring maintenance OCS treatment.