Healthcare is undergoing a paradigm shift from a paternalistic model, where healthcare professionals (HCPs) made decisions on behalf of patients, to a patient-centered approach that recognizes patients as active partners in care.

Shared Decision-Making (SDM) has emerged as a cornerstone of this transition, aiming to align treatment decisions with patients’ values, preferences, and lived experiences. For patients with esophagogastric cancer, SDM is particularly beneficial: treatment and care options are limited, invasive, and burdensome, yet differ substantially in side effects and impact on quality of life. Decisions in oncology care are preference-sensitive, emotionally charged, and made under conditions of uncertainty and stress. These factors make it essential to include the patient’s perspective in decision-making to ensure decisions are aligned with what the patient values most.

However, individuals with Limited Health Literacy (LHL) face significant barriers to meaningful participation in SDM. These barriers stem from challenges in processing medical information, expressing personal values, and navigating increasingly digitalized healthcare systems. Without tailored support, these patients risk exclusion from the decision-making  process, which increases the chances of decisional regret and reinforces health disparities.

This thesis explores how esophagogastric cancer patients with LHL can be better supported in healthcare decision-making. Conducted in collaboration with Amsterdam UMC, the project employed systemic, service, and human-centered design methodologies. A multi-layered research process combined literature review, patient journey mapping, a case study of an outpatient clinic, an extensive co-creation study involving individuals with LHL, and expert consultations. These steps revealed systemic barriers to SDM, including fragmented communication practices. Co-creation identified several needs of the target group, including a desire for more balanced communication in which HCPs allow time for pauses and actively encourage patients to ask questions.

Building on these insights, iterative idea development, prototyping, and co-creation with individuals with LHL was employed, alongside evaluation with HCPs and experts. This led to the development of a modular communication tool aligned with the project’s design goal:

“To support patients with LHL  in articulating their values and information needs, while enabling healthcare professionals to actively elicit these insights and tailor their way of informing and supporting accordingly”

Perspective Mapping, the developed tool, facilitates relational, stepwise consultations. It helps HCPs elicit and incorporate patient values, clarify treatment trade-offs, and co-construct summaries that feed into multidisciplinary meetings. Its modular structure allows flexibility, supports reflection, and enables patients to build communication skills transferable across their care trajectory.

Evaluations highlighted the concept's potential to reduce uncertainty for patients, strengthen trust, and align treatment decisions more closely the patient’s perspective. However, for sustainable adoption of the tool, and for any implementation of a communication intervention in that matter, the importance of  seamless integration into clinical workflows is underscored.

This thesis offers both a practical design intervention and a conceptual reframing of the challenges limiting communication between HCPs and esophagogastric cancer patients with LHL. It emphasizes SDM as an integrated, continuous process rather than an isolated event. By addressing the communication needs of patients alongside the workflow requirements of HCPs, the project advances the development of more equitable and patient-centered oncology care decisions.