Opening a Can of Worms”: Public hopes and fears on healthcare data sharing. A qualitative study

Title: Opening a Can of Worms”: Public hopes and fears on healthcare data sharing. A qualitative study
Authors: Lisa, F
Neves, AL
Flott, K
Harrison, P
Darzi, A
Mayer, E
Item Type: Working Paper
Abstract: 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) enablement of personal access and ownership, (2) increased interoperability and collaboration, (3) generation of evidence for better and safer care, (4) improved timeliness and efficiency, (5) delivery of more personalised care, and (6) equality. The five main ‘fears’ identified included (1) inadequate security and exploitation, (2) data inaccuracy, (3) distrust , (4) discrimination and inequality, and (5) less patient-centred care. Conclusions: This work sheds new light on the main hopes and fears from the public in what concerns healthcare data sharing. Importantly, our results highlight novel concerns from the public, in particular in what concerns the impact on health disparities, both at international and local level and on delivering patient-centred care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of healthcare data use. Clinical Trial: Not applicable
Issue Date: 28-Jul-2018
URI: http://hdl.handle.net/10044/1/83772
DOI: 10.2196/preprints.22744
Copyright Statement: © The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.
Sponsor/Funder: National Institute for Health Research
National Institute of Health Research
Imperial College Healthcare NHS Trust- BRC Funding
Funder's Grant Number: n/a
RDB04
Open Access location: https://preprints.jmir.org/preprint/19074
Appears in Collections:Department of Surgery and Cancer
Faculty of Medicine
Institute of Global Health Innovation