Validating a Co-Designed Tool for Assessing Person-Centred Coordinated Care

Background:One of the central challenges in advancing integrated care is how to measure whether services are genuinely person-centred and coordinated. Traditional quality metrics often focus on clinical outcomes and efficiency, but neglect to capture whether patients and families feel heard, respected, and supported on their care journeys. In Ireland, the Patient Narrative Project used participatory action research to co-create a nationally relevant definition of person-centred coordinated care (PCCC) and 19 related descriptors derived from patient and caregiver narratives (Phelan et al., 2021, IJIC).

Building on this foundation, we have developed a practical assessment tool that translates these descriptors into a structured questionnaire. The tool is designed to be used by patients, families, clinicians, managers, and policy-makers to assess whether care meets expectations of person-centredness, and to identify strengths and gaps across systems and services. This workshop will provide an opportunity to test, validate, and refine the tool with an international audience, ensuring it is robust, relevant, and adaptable to diverse contexts.

Audience: We invite patients, carers, clinicians, managers, policy-makers, researchers, and system leaders to take part in this workshop. People with lived experience of care are central, as the tool is designed to measure what matters most to them. Clinicians and managers will benefit from learning how the tool can inform quality improvement and service design. Policy-makers and commissioners will gain insights into embedding patient-informed indicators into performance frameworks. Researchers will explore methodological considerations for validating co-designed tools in different health systems.

Approach: (90 minutes) Welcome and framing (15 mins): Introduction to the Patient Narrative Project, the co-created definition of PCCC, and the rationale for developing the tool.

Tool demonstration (10 mins): Walk-through of the questionnaire, including its structure, scoring, and intended applications.

Interactive breakout groups (40 mins): Participants will work at roundtables to apply the tool to sample patient journeys. Each group will include a patient or carer partner. Discussions will focus on clarity, comprehensiveness, and usability.

Plenary discussion (20 mins): Groups will share findings, highlighting strengths, limitations, and opportunities for adaptation in different contexts.

Closing reflections (5 mins): Summarising next steps for validation, collaboration, and implementation across health systems.

The workshop is highly participatory, with at least 50% of time devoted to group work and dialogue. Lived experience contributions are integrated throughout.

Outcomes: By attending this workshop, delegates will:

Understand how patient and carer narratives can be translated into measurable indicators of integrated care.

Critically appraise and contribute to the refinement of a new assessment tool for PCCC.

Gain practical experience in applying the tool to real-world case studies.

Explore how the tool can support evaluation, quality improvement, and accountability in integrated care systems.

Build international connections for ongoing collaboration on developing and validating patient-informed measures of integrated care.

Ultimately, the workshop aims to strengthen the evidence base for person-centred coordinated care by ensuring that patient and family perspectives are not only heard but embedded as core indicators of quality and performance.