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

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 manager...

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Autores principales: Lammons, William Bishop, Moss, Becky, Bignell, Charlie, Gale, Chris, MacBride, Adam, Ribas, Ricardo, Battersby, Cheryl, Modi, Neena
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9890751/
https://www.ncbi.nlm.nih.gov/pubmed/36720494
http://dx.doi.org/10.1136/bmjhci-2022-100694
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author Lammons, William Bishop
Moss, Becky
Bignell, Charlie
Gale, Chris
MacBride, Adam
Ribas, Ricardo
Battersby, Cheryl
Modi, Neena
author_facet Lammons, William Bishop
Moss, Becky
Bignell, Charlie
Gale, Chris
MacBride, Adam
Ribas, Ricardo
Battersby, Cheryl
Modi, Neena
author_sort Lammons, William Bishop
collection PubMed
description 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.
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spelling pubmed-98907512023-02-02 Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset Lammons, William Bishop Moss, Becky Bignell, Charlie Gale, Chris MacBride, Adam Ribas, Ricardo Battersby, Cheryl Modi, Neena BMJ Health Care Inform Original Research 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. BMJ Publishing Group 2023-01-31 /pmc/articles/PMC9890751/ /pubmed/36720494 http://dx.doi.org/10.1136/bmjhci-2022-100694 Text en © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
spellingShingle Original Research
Lammons, William Bishop
Moss, Becky
Bignell, Charlie
Gale, Chris
MacBride, Adam
Ribas, Ricardo
Battersby, Cheryl
Modi, Neena
Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset
title Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset
title_full Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset
title_fullStr Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset
title_full_unstemmed Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset
title_short Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset
title_sort involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9890751/
https://www.ncbi.nlm.nih.gov/pubmed/36720494
http://dx.doi.org/10.1136/bmjhci-2022-100694
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