@article{Lammons:2023:10.1136/bmjhci-2022-100694,
author = {Lammons, W and Moss, R and Bignell, C and Gale, C and MacBride, A and Battersby, C and Modi, N},
doi = {10.1136/bmjhci-2022-100694},
journal = {BMJ Health & Care Informatics},
pages = {1--7},
title = {Involving multiple stakeholders in assessing and reviewing a novel data visualization tool for a national neonatal data asset},
url = {http://dx.doi.org/10.1136/bmjhci-2022-100694},
volume = {30},
year = {2023}
}

Download

TY  - JOUR
AB  - 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.
AU  - Lammons,W
AU  - Moss,R
AU  - Bignell,C
AU  - Gale,C
AU  - MacBride,A
AU  - Battersby,C
AU  - Modi,N
DO  - 10.1136/bmjhci-2022-100694
EP  - 7
PY  - 2023///
SN  - 2632-1009
SP  - 1
TI  - Involving multiple stakeholders in assessing and reviewing a novel data visualization tool for a national neonatal data asset
T2  - BMJ Health & Care Informatics
UR  - http://dx.doi.org/10.1136/bmjhci-2022-100694
UR  - https://informatics.bmj.com/content/30/1/e100694
UR  - http://hdl.handle.net/10044/1/102734
VL  - 30
ER  - 

Download