Imperial College London
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Dr Ana Luisa Neves

Faculty of Medicine, School of Public Health

Clinical Senior Lecturer in Digital Health
 
 
 
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Contact

 

ana.luisa.neves14

 
 
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Location

 

Queen Elizabeth the Queen Mother Wing (QEQM)St Mary's Campus

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Summary

 

Publications

Citation

BibTex format

@unpublished{Lounsbury:2020:10.2196/preprints.22744,
author = {Lounsbury, O and Roberts, L and Goodman, JR and Batey, P and Naar, L and Flott, K and Lawrence-Jones, A and Ghafur, S and Darzi, A and Neves, AL},
doi = {10.2196/preprints.22744},
publisher = {Journal of Medical Internet Research},
title = {“Opening a Can of Worms”: Public hopes and fears on healthcare data sharing. A qualitative study.},
url = {http://dx.doi.org/10.2196/preprints.22744},
year = {2020}
}
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RIS format (EndNote, RefMan)

TY  - UNPB
AB  - Background:Evidence suggests that healthcare data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, in order to achieve efficient, meaningful adoption of healthcare data sharing initiatives, it is necessary to engage all stakeholders, from healthcare professionals to patients. Although previous work has assessed healthcare professionals’ perceptions of data sharing, the general public perspectives and particularly seldom heard groups, have yet to be fully assessed.Objective:This study aims to explore public views, particularly their hopes and concerns, around healthcare data sharing.Methods:An original, immersive public engagement interactive experience was developed - “The Can of Worms” installation - in which participants were prompted to reflect about data sharing through listening to individual stories around healthcare data sharing. A multidisciplinary team with expertise in research, public involvement and human-centered design developed the concept. The installation took place in three separate events, between Nov 2018 and Nov 2019. A combination of convenience and snowballing sampling was used. Participants were asked to fill self-administered feedback cards, and to describe their hopes and fears about the meaningful use of data in healthcare. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes.Results:Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement and human-centered design, to tell stories, collect perspectives, and spark conversation around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ ‘hopes’ and ‘fears’ for healthcare data sharing. Thematic analyses identified six themes under ‘hopes’: (1) ena
AU  - Lounsbury,O
AU  - Roberts,L
AU  - Goodman,JR
AU  - Batey,P
AU  - Naar,L
AU  - Flott,K
AU  - Lawrence-Jones,A
AU  - Ghafur,S
AU  - Darzi,A
AU  - Neves,AL
DO  - 10.2196/preprints.22744
PB  - Journal of Medical Internet Research
PY  - 2020///
TI  - “Opening a Can of Worms”: Public hopes and fears on healthcare data sharing. A qualitative study.
UR  - http://dx.doi.org/10.2196/preprints.22744
UR  - http://hdl.handle.net/10044/1/83918
ER  -
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