A new digital service is helping clinicians see what children and families are reporting before consultations, while building the longitudinal outcomes data needed to understand which interventions work, for whom and where care could improve.
The NHS has no shortage of data. The more difficult question is whether clinicians and service leaders can use it to improve care.
That challenge sits at the heart of NHS England’s new Quality Strategy which calls for more consistent monitoring of clinical outcomes, better visibility of data and greater accountability for performance. It also asks local organisations to give frontline teams information they can act on, while enabling leaders to identify trends, variation and emerging concerns.
At Sheffield Children’s NHS Foundation Trust, a change in the way Patient-Reported Outcome Measures (PROMs) are collected offers a practical example of what that can look like.
The trust’s Paediatric Psychology Team has worked with Aire Innovate to create a digital PROMs service that combines complex clinical measures, automated scoring and workflow automation. The immediate result is a substantial reduction in administration. More importantly, information that could previously be delayed or missed is now being collected more consistently and made available to clinicians before they see a child.
Over time, that is creating something the service has not had before: longitudinal outcomes data that can show how individual children progress across treatment journeys lasting 12 to 18 months, while giving clinical leaders a clearer view of outcomes across pathways and interventions.
Situation
Sheffield Children’s is one of only three dedicated children’s hospital trusts in the UK. Its Paediatric Psychology Team supports children and families experiencing psychological difficulties associated with physical conditions and their treatment.
PROMs are an important part of this work. They give children and families a structured way to report how they are feeling and help clinicians assess symptoms, follow progress and understand whether an intervention is making a difference.
But the process had remained largely paper-based and manual. Some of the measures are substantial, with questionnaires used to assess symptoms of anxiety and depression in children and young people, containing 47 items. These had to be sent, completed and returned before clinicians calculated the relevant scores by hand.
Administering paper PROMs could account for 8–15% of consultation time. In a stretched service, the practical work of sending, chasing and scoring questionnaires also meant they could be delayed or, on occasion, not sent at all.
This was not simply an administrative problem. It created gaps in clinically useful information, particularly where children were reviewed only every six to eight weeks or received some psychological support remotely. A clinician might begin a consultation without a current, structured account of how that child or family felt their condition was changing.
Challenge
Digitising established clinical measures sounds straightforward. The challenge was finding a system that could preserve what made them clinically valid and useful.
Sheffield Children’s needed to reproduce complex questionnaires accurately and apply the correct scoring methodologies consistently. A basic online form would still have left clinicians calculating results manually, moving the burden rather than removing it.
The team also needed workflows that could issue the right measure at the right stage of care, remind families when appropriate and make the scored results available before a consultation. The service had to accommodate change as measures, pathways and clinical requirements evolved.
No off-the-shelf ePROMs product met that combination of requirements without asking the team to adapt its clinical processes around the technology.
Sheffield Children’s instead worked with Aire Innovate to build a configurable service around existing practice. Psychologists, family therapists, cognitive behavioural therapists and psychiatrists contributed to its development, considering each field, calculation and automated step in the context of everyday care.
The result is believed to be the first NHS-led paediatric psychology implementation to bring complex established outcome measures, automated clinical scoring and workflow automation together within an integrated digital service.
Solution
Children and families now receive the appropriate questionnaire electronically and can complete it remotely, including on a mobile phone, without needing another username or password.
Clinicians choose the measures required for each patient. Automated workflows support distribution and reminders, while algorithms apply the relevant scoring methodology consistently. The results are then available for the clinical team to review before speaking to the child or family.
This changes the starting point of the consultation. Rather than using clinical time to administer a questionnaire or calculate its score, the clinician can focus on what the responses mean, explore changes and involve the child and family in decisions about care.
The team has digitised a growing range of established measures, including anxiety outcomes and questionnaires used with children receiving psychological care in connection with physical conditions such as cystic fibrosis. Because the service is configurable, it can be refined as clinical needs develop. Early feedback from staff has already led to changes in details such as terminology and button wording.
The innovation is therefore not the digital questionnaire itself. It is the connection between reliable collection, clinically accurate scoring, workflow and the decisions that follow.
The original development has continued to expand. The current platform now hosts a range of PROMs which can be chosen from dependent upon which is the most clinically appropriate for the young person and family. We now have longer, more detailed measures such as the RCADS as well as The Wheel and shorter measures such as the Distress Thermometer and Goal Attainment Scale. We also have a bespoke Patient Feedback form which is now being used to assess satisfaction and learn from positive and constructive feedback.
Results
More than 30 clinicians are using the service, and 600 questionnaires have been returned electronically during the first nine months.
The administration time saved for clinicians, who previously would have sent out the PROMs in advance of sessions, is approximately 10 to 30 hours. Furthermore, automated scoring has removed 5 to 10 minutes of manual calculation within every hour-long assessment (approximately 8-15% of the session). These savings of 40-70 hours matter in a service where clinical capacity is limited.
But the more significant gain is the creation of a more complete and consistent outcomes record. As the dataset grows, clinicians will be able to follow changes for an individual child across a whole course of treatment. At service level, teams will be better placed to examine where patients are progressing, compare outcomes across pathways, identify variation and evaluate whether interventions are achieving the intended results.
More structured data could also strengthen research and multicentre studies. In paediatric psychology, efforts to demonstrate the effectiveness of interventions have been limited by the availability of consistent, standardised outcomes information.
This does not mean PROMs can provide a complete or automatic verdict on quality. Scores need clinical interpretation and must be considered alongside professional judgement, the child’s circumstances and what families say matters to them. Their value lies in making the patient’s perspective more visible and giving teams a consistent source of evidence from which to ask better questions.
Impact
The NHS Quality Strategy defines high-quality care through safety, effectiveness and experience. It also places a greater expectation on providers to use real-time and trend data to monitor outcomes, give frontline teams actionable information and enable leaders to spot unwarranted variation.
Sheffield Children’s work connects those ambitions at several levels. It strengthens experience by giving children and families a more convenient way to report how they are doing. It supports effectiveness by helping clinicians understand whether care is producing the outcomes that matter to patients. And it creates information that can contribute to quality improvement, governance and service evaluation.
Crucially, the project shows that collecting more data is not the same as generating insight. Data becomes useful when it is captured consistently, interpreted in context and returned to the people who can act on it.
Dr Stephen Jones, Principal Clinical Psychologist at Sheffield Children’s NHS Foundation Trust, said: “The time saving is important, particularly when clinical capacity is so precious, but the bigger change for us is that we are collecting this information much more consistently.
“These measures tell us something important about how a child is doing, but historically the practicalities of sending questionnaires, getting them back and scoring them could get in the way.
Nexts steps
Sheffield Children’s is expanding the range of validated measures available and refining the service in response to clinicians, children and families.
As more patients complete their treatment journeys, the trust will be able to move beyond measuring whether the process is quicker and begin examining clinical outcomes and intervention effectiveness in greater depth. This should create opportunities for service evaluation, research and shared learning with other organisations.
The broader lesson is that productivity and quality do not have to compete. Removing repetitive administration can release clinical time, but its greater value may be in making previously fragmented information reliable, visible and useful.
For an NHS expected to demonstrate outcomes rather than activity alone, that is the more important change.
We will continue to use the data collected from this platform in order to inform service delivery and support research. For example, a formal service evaluation of using the platform to deliver routine outcome measures in a multidisciplinary Cystic Fibrosis clinic has already demonstrated the effectiveness of this new way of working.
