Designing a strategy for accessible and consistent information provision within sickle cell disease
P.A.K. van der Veer (TU Delft - Industrial Design Engineering)
A. Albayrak – Graduation committee member (TU Delft - Industrial Design Engineering)
M. Bos-de Vos – Mentor (TU Delft - Industrial Design Engineering)
Marjon H. Cnossen – Mentor (Erasmus MC)
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Abstract
Background and Problem Statement
Sickle cell disease is a chronic hereditary blood disorder that significantly impacts the daily lives of children and their families. Approximately 2000 people in the Netherlands live with sickle cell disease, about half of whom are children. Care is provided in specialized sickle cell centers, where parents and children receive complex medical information that they must apply in daily life. The patient population often consists of families with a migrant background, where language barriers, cultural differences, and low health literacy hinder the understanding of information. This study shows that the current information provision is highly fragmented, varies by healthcare provider and care center, and insufficiently meets the needs of families. The lack of a national standard for which information is provided and when, combined with overly complex and insufficiently accessible materials, leads to misunderstanding, uncertainty, and additional pressure on both families and healthcare providers.
Research Approach
This project followed a human-centered design approach based on the Double Diamond model, focusing on the perspective of healthcare providers. Through literature research, observations at the Sophia Kinderziekenhuis, interviews with healthcare providers from various sickle cell centers, and a context analysis (actor map, work models, and journey map), the current situation was mapped and structural bottlenecks identified. Based on these insights, a clear design direction was chosen, which was then translated into a concrete strategy through co-creation with healthcare providers.
The Solution: A Uniform and Phased Information Strategy
The core of the solution is a newly developed infographic that serves as a blueprint for information provision. This tool is designed to be incorporated into the national guideline for sickle cell disease.
The strategy is characterized by:
Phased information provision: Information is not provided all at once, but at meaningful moments that correspond to the child's life stage.
National uniformity: Integration into the national guideline ensures that all patients, regardless of care center, receive the same consistent information.
Clear division of roles: The infographic supports the care team by assigning education to the nurse practitioner.
Implementation strategy
An implementation strategy, including both a strategic and a tactical roadmap, was developed to support realization. This strategy consists of collective alignment, national development of a standardized information set through co-creation with parents, patients, and healthcare providers, and sustainable anchoring through inclusion in clinical guidelines and integration into existing workflows.
Conclusion
This project offers a concrete answer to the fragmentation in the information provision within sickle cell disease. By introducing a uniform and phased information structure, healthcare providers are supported and parents and children receive the right information at the right time, in an accessible, consistent and understandable manner.