Empowered to Care

Abstract

The Dutch healthcare system is under increasing pressure from demographic ageing, rising care demand, and limited specialist capacity. In rheumatology, this pressure is particularly visible: a growing share of patients referred to specialist care do not necessarily require specialist treatment, contributing to long waiting times and high workloads. Understanding why this happens requires looking at the system as a whole, rather than at isolated steps in the care pathway.

This project explored how design can contribute to balancing the inflow of patients with joint complaints and the capacity of rheumatology care, using the rheumatology department of Reinier de Graaf Gasthuis as its primary context. The research combined observations at four hospital settings, eighteen semi-structured interviews with patients, primary care professionals, secondary care professionals, and a systemic stakeholder, thematic analysis, and future visioning.

The research revealed four interconnected opportunities in the system: 'Bridging the gap between patient expectations and what care can offer', 'Primary care as a powerful filter for the right care at the right place', 'The patient as the most powerful factor in their own recovery', and 'Working smarter within the boundaries of a financially constrained system'. The design direction was focused on the opportunity where design could intervene most directly: supporting patients in taking a more active role in their own recovery in relation to lifestyle factors.

This led to the development of Jointly, a mobile application for people with non-inflammatory joint complaints in primary care. Jointly helps users reflect on their complaints, recognise the role of lifestyle factors, and translate these insights into small, feasible actions in daily life. The app uses an AI coach named Skelly to guide users through daily check-ins, personal insights, and concrete next steps, structured around the six domains of 'Het Leefstijlroer'. An optional community function allows users to connect with others in similar situations.

Jointly is positioned after the GP consultation and before referral to secondary care is considered, offering patients guidance and a sense of agency during a phase in which they are often expected to manage their complaints independently. Initial validation with a patient and two general practitioners confirmed the relevance of the concept, while also highlighting the importance of scientific credibility, continuity of support, and careful implementation. If successfully implemented, Jointly has the potential to contribute to fewer unnecessary referrals to rheumatology and a more active role for patients in their own recovery, though these effects require further longitudinal research to evaluate.