Patient Reported Outcomes in children’s health services: why should we use them and how can they be embedded in Epic?


Patient Reported Outcomes (PRO) have been used for decades in clinical trials, observational studies, population health surveys, and for estimates of quality of life in economic evaluations. However, the use of PROs as part of routine measurement in clinical settings is relatively new.  In this Grand Round, 3 speakers will discuss the use of PROs in the UK, in mental health at RCH and integrating PROs into the EMR.

Professor Nancy Devlin will present the experience of the English NHS PRO programme – what has worked, and what hasn’t, and what other countries are learning about good practice in using PRO measures to inform health service delivery.  The use of PRO in measuring and valuing children’s health raises particular challenges.

Dr Ric Haslam will discuss how standardised outcome measurements is mandatory in Australian public mental health services, and how RCH Mental Health has integrated such measurement scales into the clinical process, to foster participation in care by patients and their families, and to improve goal-setting and tracking of progress. RCH Mental Health has begun a process to become a more evidence-based and outcomes-driven service. To do this we examined the literature and established a suite of disorder-specific measures for rating symptom severity and tracking progress of treatments. Measures were selected on the basis of use in literature, cost and ease of use in clinical practice.

Professor Tony Penington will discuss the building of Paediatric Quality of Life assessment (PedsQL) into Epic, via the patient portal and filled in prior to outpatient appointments. Measurement of outcomes is essential to quality improvement in medicine, but it needs to be built into our everyday practice, and EPIC presents a unique opportunity to achieve this goal.


Professor Nancy Devlin is Professor of Health Economics and Director of the Centre for Health Policy at the University of Melbourne. She is the president of ISPOR, the professional society for health economics and outcomes research (HEOR) globally and is past-president of the EuroQol research foundation which developed the EQ-5D and EQ-5D-Y. Nancy is an advisor to health care organisations in the UK, Sweden, Canada and NZ on PRO measurements, and is co-author of the books Using patient reported outcomes to improve health care, Economic analysis in health care and Guidance on analysing EQ-5D data (forthcoming). In 2018 Nancy led a research programme on methods for valuing paediatric health states at the Office for Health Economics, London.

Dr Ric Haslam is Director of Mental Health at The Royal Children’s Hospital.

Professor Tony Penington is the Jigsaw Professor of Paediatric Plastic and Maxillofacial Surgery at The Royal Children’s Hospital.

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