Quality healthcare systems are those that “optimize care by consistently delivering care that improves or maintains health, by being valued and trusted by all people, and by responding to changing population needs.” Quality healthcare systems are needed to improve health; however, current healthcare systems are not always responsive to the needs of the population. People-centered approaches result in better health outcomes and resource allocation. To build people-centered healthcare systems, the World Health Organization (WHO) proposes to empower and engage people in the co-production of services or as accountability agents. Engagement of people can take many forms. This thesis focuses on the selection of outcomes for research (to measure the effectiveness of an intervention) or as part of monitoring and evaluation of healthcare systems in routine care.

A core outcome set (COS) is “the agreed standardized sets of outcomes that should be measured and reported in all clinical trials for a specific health condition”. COS can be used in both research and monitoring and evaluation of a healthcare system. Involvement of different stakeholders during COS development is essential to ensure that relevant outcomes are included and there is a need to develop methods to achieve this. Most of the COS that exist have been developed in high-income countries which may limit their application in low-and-middle-income countries, mostly when proposed for routine care.

Co-creation is an approach that advocates for the participation of the end user in informing, ideating and conceptualizing activities. In the case of the healthcare system, the end-users are patients and their caregivers. This thesis proposes to use this approach to develop a COS using type 1 diabetes mellitus (T1DM) as a model. T1DM can be considered as a tracer for the healthcare system functioning as it is prevalent in all populations and its outcomes are directly related to the functioning of the healthcare system.

The overall aim of this thesis was to develop a “recipe” on using co-creation approaches to create a COS by including people with lived experience and their caregivers’ perspectives considering T1DM as a model focusing on low-and-middle-income countries.

Three objectives were stated: 1) better understand current interventions for the management of T1DM and how they meet the needs of people living with T1DM, 2) identify the outcomes related to T1DM management using a mixed approach (quantitative and qualitative reviews of the literature), and 3) prioritize outcomes for T1DM using a co-creation approach through a workshop involving different stakeholders in Peru.