Healthcare systems design: A participatory outcome-based approach for multistakeholder negotiation

This thesis investigates the role of healthcare outcomes as a system to be applied in the (re)design of healthcare systems, notably in the context of long-term conditions. A participatory mapping outcome based approach that facilitates a space for multiple stakeholder negotiation has been developed to explore this phenomena following the four stages of the Design Research Methodology (DRM).

Despite the growing recognition that outcomes in healthcare systems-level interventions rarely perform in an expected way and emerge from multiple and interrelated elements, there is little support concerning the understanding of multiple outcomes interrelations and their practical application in the systems (re)design process. Moreover, perspectives from multiple stakeholders are required to build a holistic understanding of healthcare outcomes. However, working with such heterogeneous groups bring extra challenges due to the multiple and frequently conflicting views about outcomes, values and purposes. Given this situation, facilitating the understanding of outcomes ‘as a system’ whilst they are negotiated in an equitable space in necessary.

In the first stage of DRM, the outcome-based approach was conceptually defined and initially applied with the design and human factors community. The approach was then refined in the second and third stages through one-to-one and participatory mapping sessions with people living with long-term conditions, senior managers and commissioners. The last stage concludes with a preliminary evaluation with design academics and practitioners.

The research resulted in an outcome-based approach that i) proposes a reconceptualisation of healthcare outcomes and ii) offers a practical dialogical mapping method to understand and negotiate outcomes with multiple stakeholders. Firstly, the reconceptualisation acknowledges that outcomes are value-dependent, continuous adaptable and may not respond to the short/long term structure.

The bespoke network analysis accompanying the approach reveals tacit knowledge about outcomes 'as a system' that guides the identification of critical outcomes that can create propagation or become brokers. Furthermore, it identifies implications of considering wellbeing as the system's purpose, which may require positive feedback and allow interaction with the system without exacerbation. Finally, the clarified role of values enriches participation (complexity sampling) and agrees upon high-level commitments.

Secondly, the mapping method discards imposing a visual structure and instead combines an open mapping strategy with outcome representations. This method encourages stakeholders to freely make sense of their priorities and negotiate their conflicts, trade-offs and enduring needs whilst balancing the power dynamics of participation.

This research has contributed to offering a new perspective on the role of outcomes for the (re)design of healthcare systems and providing practical applications that can encourage their integration.