Patient-Reported Outcomes in Integrated Care: A Frontier of Opportunities and Challenges

Shared outcomes at place level using tools such as the Shared outcomes toolkit for IC systems i.e., in Leeds, UK, PROM data for frailty populations is collected using the Patient-Reported Outcomes Measurement Information System [PROMIS] Global Health measure and a measure of person centred coordinated care to measure the outcome described as ‘Living and ageing well’ [27].

Flexible system design to ensure electronic health record compatibility and Interoperability to support data sharing and data linkage thorough common data standards and information governance frameworks [28] [29]

Development of shared and common terminology

Initiatives to share PROMs best practice

Develop and promote PROMs awareness and expertise using existing resources such as the PROTEUS-Practice guidelines [30] applicable to a broad range of environments, including integrated health systems

Define and communicate key PROM system objectives, such as purpose of completion and who is accessing the data [31]

Guidance on systemised approaches to review and action of PROM results and managing expectations.

Harness existing electronic platforms to administer PROMs

Development of dashboard approaches supporting PROMs data alerts, effective interpretability linked to tailored decision support and self-management advice.

Use process mining techniques to understand existing care pathways and how PROMs might fit/impact [32] e.g., PROMs informed symptom management that aligns with existing workflow

Involve all interested parties in design and implementation, focusing on local needs/priorities

Identify specific needs of underserved populations i.e., health/digital literacy and access issues

Optimise accessibility; allow onsite completion via kiosk/tablet, enable ‘bring your own device’

Investigate cultural applicability of chosen measures including language availability.

Be aware of distrust in systems or providers, or impact of mental and physical health issues that may lower an individual’s commitment to complete PROMs [33],

Developing methods for wider inclusion of people with severe intellectual, communication and cognitive impairments i.e., easy read versions/carer versions. Examples from ASCOT suite of tools in social care [3435]

New and extended roles for clinical ‘champions’ and ‘patient navigators’ to support initiatives for PROMs completion

Ensure evaluation includes care service users to ensure PROM systems are not over-digitising the person’s experience or adding excessive burden. Utilise expert recommendations on how to reduce respondent burden associated with PROMs [26]

Flexible data collection features offering efficient, easy user experience with completion reminders

Invest in emerging technologies i.e. Computer Adaptive Testing and item banks to reduce questionnaire burden

To investigate empirical evidence of benefit of using PROMs in IC

Into measures that may offer most benefit within IC settings i.e., to inform care associated with multiple long-term conditions

Employ PROM/PREM data within quality improvement initiatives using in-depth analysis and Plan-Do-Study-Act-cycles [22].