Evidence is needed to make decisions that address people’s needs to improve their health. However, most studies do not systematically measure outcomes that are relevant for patients which means that decision-makers are lacking this perspective when selecting an intervention for funding or integration within a health system. Thus, it has been proposed that having “core outcome sets” (COS), a standardized set of outcomes to be used in all studies for a specific health condition, based on patients’ needs could be a solution. However, most COS have been developed by clinicians without considering patients’ values and preferences.

Aim:

Develop a method using co-creation approaches to create a core outcome set (COS) by including patients’ and caregivers’ perspectives considering type 1 diabetes mellitus (T1DM) as a model.

Study design:

Prioritization workshop using co-creation approaches in 2023. We will conduct a workshop involving different stakeholders (patients living with type 1 diabetes and caregivers, patient associations, healthcare practitioners, local authorities, and researchers). Activities of the workshop, including group discussion and discussion in the plenary sessions, and voting will be audio-recorded and transcribed verbatim, and thematic analysis will be conducted using Nvivo. We will contrast results between and within the 4 groups.

Result:

The workshop found that, although priorities varied among the groups of participants, all stressed the importance of improving the health system as an initial step that could lead to a reduction in mortality due to diabetes.

Participants recognized the interdependence between the proper functioning of the health system, clinical outcomes, self-management and quality of life.

Outcomes related to economic impact on the individual and structural support (e.g., health promotion policies and protection of those living with diabetes) were considered more important than measuring clinical outcomes.

Different groups of participants prioritized outcomes in different ways. Therefore, the inclusion of these stakeholders (people living with diabetes, caregivers, health personnel and health decision-makers) is necessary to achieve better health policies.

By incorporating diverse perspectives, healthcare systems can better address patients’ needs and improve the overall quality of care.

Contact:

Jessica Hanae Zafra-Tanaka, MD, MSc

jessica.zafra@upch.pe