Quality of Life Research (2026) 35:42
Moving forward, leaving the patients behind? A multilevel assessment framework for evaluating patient-centred, integrated care quality
Authors: Sonja Cassidy, Ove Lintvedt, Francis Odeh, Conceição Granja, Terje Solvoll
Publication Date: January 14, 2026
Many current care assessment frameworks prioritise clinical and organisational outcomes over patient perspec- tives. This study aimed to identify gaps in existing patient-centred assessment methods and to develop a multilevel frame- work aligning quality evaluation with patient-defined priorities across macro (policy), meso (organisational), and micro (individual) levels, and technological levels. We propose Patient-Reported Integrated Measures (PRIMs) as a conceptual contribution, complementing existing PROMs and PREMs by capturing multidimensional outcomes that matter to patients.
Executive Impact: Bridging the Gap in Patient-Centred Care
Current healthcare evaluation often overlooks the patient's lived experience. Our analysis reveals critical areas where patient perspectives are missing, leading to fragmented care and misaligned outcomes.
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included in literature review
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of records documented non-clinical patient data
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of studies addressed multiple care levels
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of studies emphasized dignity & well-being
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highlighted lack of robust frameworks
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used non-EHR-integrated outcomes
Deep Analysis & Enterprise Applications
Select a topic to dive deeper, then explore the specific findings from the research, rebuilt as interactive, enterprise-focused modules.
Macro-level Findings
Meso-level Findings
Micro-level Findings
Technological Dimension
Introducing PRIMs
Macro-level Evaluation Challenges
At the policy level, current healthcare evaluation frameworks often prioritize clinical effectiveness and cost over patient-defined quality of life. Aggregated PROMs are used, but individual patient priorities and context are rarely captured, leading to a disconnect between systemic goals and patient well-being.
Enterprise Application: Our framework can integrate patient feedback into national health policies, ensuring that resource allocation and policy development are directly informed by the needs and goals of the patient population, rather than relying solely on high-level metrics that may not reflect true quality of care. This will ensure top-down strategies align with bottom-up realities.
Meso-level Integration Gaps
Organisational practices often use PROMs and PREMs, but these rarely inform the design of evaluation processes or define relevant outcome measures from a patient perspective. Limited involvement of non-clinical professionals and patients themselves in co-design processes restricts the capacity of these measures to genuinely reflect patient priorities or drive quality improvement efforts aligned with patient goals.
Enterprise Application: By empowering multi-disciplinary teams to co-design evaluation criteria with patients and non-clinical professionals, our approach ensures that quality improvement initiatives at the organisational level directly address what matters most to patients. This strengthens inter-team collaboration and service coordination based on shared, patient-defined objectives, leading to more responsive and effective care delivery.
Micro-level Patient Perspective Omissions
At the individual level, care assessment frequently relies on standardized, retrospective tools that fail to capture the nuanced, evolving needs, emotional states, and broader life context of patients, especially those with complex, co-occurring conditions. Important subjective dimensions like autonomy, dignity, and being heard are often undervalued or unrecorded.
Enterprise Application: Implementing PRIMs at the micro-level allows for the systematic capture of individual patient goals and non-clinical needs, integrating them directly into personalised care plans and shared decision-making. This ensures that care is truly patient-centred, addressing the full spectrum of well-being, not just clinical outcomes. It reduces the risk of interventions conflicting with patient priorities.
Technological Data Silos & Interoperability
While digital tools like EHRs and patient portals collect patient-reported data, poor interoperability and lack of standardized, EHR-compatible measures hinder their effective use for comprehensive evaluation, real-time decision support, and longitudinal tracking. Unstructured data often leads to missed insights and prevents scalable automation of patient-centred care.
Enterprise Application: Integrating PRIMs into health information systems with standardized, interoperable formats ensures patient-defined outcomes are systematically captured, shared, and utilized across all care settings. This facilitates real-time decision support, automated evaluation, and long-term tracking of patient progress, transforming fragmented data into actionable insights for continuous quality improvement and personalized care delivery.
Introducing Patient-Reported Integrated Measures (PRIMs)
PRIMs are proposed as a new conceptual contribution to complement existing PROMs and PREMs. Unlike conventional tools, PRIMs aim to capture the multidimensional outcomes that truly matter to patients, ensuring evaluation aligns with their evolving goals, needs, and life context across macro, meso, and micro levels of healthcare.
Key Principles of PRIMs:
- Multidimensional: Captures physical, mental, social, and functional well-being.
- Patient-defined: Focuses on what patients themselves value and prioritize.
- Integrated: Aligns evaluation across policy, organizational, and individual care levels.
- Contextual: Considers the patient's full life context, cultural background, and personal goals.
- Actionable: Designed for structured data collection and integration into EHRs to drive clinical and policy decisions.
Enterprise Application: Implementing PRIMs enables a holistic view of care quality, translating broad frameworks like WHO's QoL definition into actionable metrics. This ensures healthcare reforms genuinely reflect patient priorities, fostering a truly patient-centered system that moves forward without leaving anyone behind.
9%
of records documented non-clinical, patient-provided data in case study, highlighting a significant gap in capturing holistic patient perspectives.
Enterprise Process Flow: PCICP Development Methodology
Retrospective medical records review
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Gap analysis (EHRs & patient data)
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PCICP modelling (patient perspective integration)
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Case Study: Revealing the Missing Patient in Healthcare Records
The "Revealing the Missing Patient" case study involved reviewing 1,117 medical records from general practice, hospital, emergency departments, mental health services, and social/home care for patients with complex co-occurring mental and physical illnesses. It highlighted critical disconnects:
- Only 9% of records documented non-clinical, patient-provided data, such as care preferences, health goals, life events, and social needs, despite frequent discussions.
- Lack of patient-centred documentation led to interventions conflicting with patient goals. For example, a patient seeking social reconnection was given in-home nursing care instead of support for community engagement.
- Disconnected records and poor information exchange between providers resulted in duplicated services and inefficient care transitions, indicating a systemic failure to integrate patient context.
- Personal goals and non-clinical needs were often unrecorded, pointing to a significant gap between evaluation metrics and genuinely patient-centered care.
This case study underscored how patient narratives are often lost or fragmented across different health information systems, limiting truly integrated and patient-centered care.
Calculate Your Enterprise ROI with Patient-Centred AI
Estimate the potential efficiency gains and cost savings by integrating patient-defined outcomes and AI-powered insights into your healthcare system.
Estimated Annual Savings
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Annual Hours Reclaimed
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Your Roadmap to Patient-Centred AI Implementation
A phased approach ensures seamless integration of PRIMs and AI, transforming your healthcare assessment and delivery.
Phase 1: Discovery & Co-Design (1-3 Months)
Engage stakeholders, conduct needs assessments, and co-design PRIMs with patients and healthcare professionals. Define clear purpose, scope, and target levels (macro, meso, micro) for PRIMs implementation.
Phase 2: Technical Integration & Pilot (3-6 Months)
Develop standardized ePRIMs format for EHR integration, ensuring interoperability. Pilot PRIMs in selected care settings, focusing on data capture, storage, and initial feedback loops.
Phase 3: Training & Systemic Alignment (6-12 Months)
Implement comprehensive training for staff on PRIMs interpretation and application. Align organizational practices and national policies to reflect patient-defined priorities, driven by PRIMs data.
Phase 4: Scaling & Continuous Improvement (12+ Months)
Scale PRIMs across the enterprise, leveraging AI for advanced analytics and predictive insights. Establish continuous monitoring and refinement processes to adapt to evolving patient needs and technological advancements.
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Implement Patient-Reported Integrated Measures (PRIMs) and AI to truly center care around patient priorities.
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