Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset

Abstract

Objectives We involved public and professional stakeholders to assess a novel data interrogation tool, the Neonatal Health Intelligence Tool, for a National Data Asset, the National Neonatal Research Database. Methods We recruited parents, preterm adults, data managers, clinicians, network managers and researchers (trialists and epidemiologists) for consultations demonstrating a prototype tool and semi-structured discussion. A thematic analysis of consultations is reported by stakeholder group. Results We held nine on-line consultations (March–December 2021), with 24 stakeholders: parents (n=8), preterm adults (n=2), data managers (n=3), clinicians (n=3), network managers (n=2), triallists (n=3) and epidemiologists (n=3). We identified four themes from parents/preterm adults: struggling to consume information, Dads and data, bring data to life and yearning for predictions; five themes from data managers/clinicians/network managers: benchmarking, clinical outcomes, transfers and activity, the impact of socioeconomic background and ethnicity, and timeliness of updates and widening availability; and one theme from researchers: interrogating the data. Discussion Other patient and public involvement (PPI) studies have reported that data tools generate concerns; our stakeholders had none. They were unanimously supportive and enthusiastic, citing visualisation as the tool’s greatest strength. Stakeholders had no criticisms; instead, they recognised the tool’s potential and wanted more features. Parents saw the tool as an opportunity to inform themselves without burdening clinicians, while clinicians welcomed an aid to explaining potential outcomes to parents. Conclusion All stakeholder groups recognised the need for the tool, praising its content and format. PPI consultations with all key groups, and their synthesis, illustrated desire for additional uses from it.

Respiratory management and outcomes in high-risk preterm infants with development of a population outcome dashboard

“…More recent data visualisation tools provide useful mortality data but do not offer individualised detailed incidence of the type of respiratory support requirement, postnatal dexamethasone use or outcome information at weekly intervals during the whole neonatal stay depicted in our online dashboard ( figure 4B ), something parents and clinicians are keen to understand. 38 The POD dashboard could aid clinicians in tracking the progression of the respiratory outcomes in the infants they care for on a weekly basis with the anticipated outcomes from a national population. The visualisation of the incidence of respiratory outcomes in this manner may help difficult discussions with parents and support the decision-making process on a targeted approach for high-risk treatments such as dexamethasone, especially as good prediction models for BPD are still lacking.…”