Unmet health-related needs : the NEED project (HORIZON-CL1)

The goal of NEED is to establish a solid evidence-based database on unmet health-related needs across various conditions, including data collected according to standardized procedures to ensure scientific quality.  

The current health innovation system, primarily supply-driven, inadequately addresses some high-priority unmet needs, leading to significant gaps in areas like mental health and antimicrobial resistance. Transitioning towards needs-driven healthcare innovation and policy requires, as a first step, identifying and prioritizing of unmet needs across diseases. Although there is no single definition of unmet health-related needs, there is consensus that diseases generate individual as well as societal needs. The NEED project defines health-related needs as the specific needs related to a particular health condition, which encompasses the needs of individuals affected by the condition and possible broader societal needs that result from the impact of the condition on segments of society not directly afflicted by the condition (e.g. transmissibility, impact on informal caregivers, environmental impact).  The NEED initiative was launched in 2022 in the context of the Belgian Presidency of the Council of the European Union. A lot of work has already been done with the development of a EU-validated NEED assessment framework, including criteria and indicators to measure unmet patient and societal needs, a research protocol and toolbox for performing NEED studies and the establishment of a NEED evidence database. Three case studies have been conducted in Belgium: Long COVID, Crohn’s disease, and malignant melanoma. Two additional studies are currently underway on psychotic disorders and chronic fatigue, and several more are planned for the coming year. 

The NEED initiative was presented at a high-level European conference in April 2024. Following the interest expressed by several national and international organisations, the development of NEED continued within the Belgian Health Care Knowledge Centre and Sciensano. The objective is to expand the NEED initiative to other European countries through international collaboration and EU funding. We are seeking partners from other countries to join us in this effort. We are looking for researchers at academic centers, public research institutes or HTA agencies, with an interest in public health research. We are looking for collaborators who are able and willing to perform national NEED surveys, possibly complemented with patient interviews, secondary data analyses for administrative databases (e.g. reimbursement databases, registries). We are in the early stage of developing a proposal for EU funding. The tools and processes are relatively well-established, but we need colleagues who can coordinate national studies on the unmet patient and societal needs for different diseases.