Abstract
Do electronic outcome assessments offer an opportunity to bolster the effectiveness of integrated care in settings where individuals may receive both healthcare and social services?
Integrated Care Systems (ICS) were formed to create partnerships involving the National Health Service, local councils, community and voluntary organisations, local residents, people who use services and their carers with a role in supporting the health and wellbeing of the population. They aim to tackle key challenges supporting people to stay well and independent, particularly those with multiple long-term or mental health issues, early intervention to prevent illness and efficient use of collective resources so that people receive the right care, at the right time in the right place.
Outcomes represent the tangible results stemming from the care and treatments administered to individuals within clinical or other care settings. Certain outcomes, such as symptoms, quality of life, and various aspects of physical, mental, and social well-being, can only be accurately gauged when reported directly by the individuals themselves. These are known as patient-reported outcomes, and they are typically collected through electronic questionnaires, enabling us to evaluate and quantify matters of personal significance (ePROs).
In collaboration with patient and public partners we are undertaking a programme of research exploring the role of ePROs in the delivery of integrated care. Scoping work, prioritised by key stakeholders including persons with lived experience of health and social care services (n=3), clinical and academic experts (n=4) and representatives from a charity supporting independent living (n=2), has identified that while ePROs use in healthcare is relatively well-established, the international evidence for ePROs usage in integrated care settings is unclear and often unreported. This is despite key stakeholders agreeing in an independent review commissioned by the United Kingdom government that data collection should increasingly include outcomes (including, crucially, Patient Reported Experiences and Outcomes) rather than mainly focusing on inputs and processes.
Early engagement with the NIHR Applied Research Collaborative West Midlands Public Advisory Group (n=18) has led to the design of a mixed methods study to explore whether effective use of ePROs data across integrated care settings is possible. It will investigate outcomes of interest and practical issues such as availability of measures, timing, and mode of administration. It aims to investigate challenges relating to a lack of consistency in concepts, definitions, and terminology together with different philosophical approaches and drivers for care delivery in the various sectors that support integrated care.
We would like to take this opportunity to network with a diverse international group to explore ePROs as an approach to measuring what matters to people and communities, capable of delivering an improvement in services at both individual and aggregate levels. We would like to discuss PROs use to support multi-disciplinary and cross organisational working, to increase self-management and patient and family empowerment and whether ePROs can offer digital solutions to current healthcare problems by supplementing virtual care, telehealth/care solutions, whilst probing potential unexpected or undesirable consequences i.e., increasing existing inequities caused by poor health or digital literacy.