Use the links below to access our reports, or scroll down to use the search function to explore all of our publications including peer-reviewed papers and briefing papers.

Browse all publications


BibTex format

author = {Olivia, L and Roberts, L and Jonathan, R G and Pip, B and Lenny, N and Kelsey, M F and Anna, L-J and Saira, G and Ara, D and Neves, AL},
doi = {10.2196/22744},
journal = {Journal of Medical Internet Research},
title = {“Opening a Can of Worms” - exploring public hopes and fears on healthcare data sharing: qualitative study},
url = {},
volume = {23},
year = {2021}

RIS format (EndNote, RefMan)

AB - Background: Evidence suggests that health care data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, to achieve efficient and meaningful adoption of health care data-sharing initiatives, it is necessary to engage all stakeholders, from health care professionals to patients. Although previous work has assessed health care professionals’ perceptions of data sharing, perspectives of the general public and particularly of seldom heard groups have yet to be fully assessed.Objective: This study aims to explore the views of the public, particularly their hopes and concerns, around health care 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 health care data sharing. A multidisciplinary team with expertise in research, public involvement, and human-centered design developed this concept. The installation took place in three separate events between November 2018 and November 2019. A combination of convenience and snowball sampling was used in this study. Participants were asked to fill self-administered feedback cards and to describe their hopes and fears about the meaningful use of data in health care. 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 conversations around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ hopes and fears for health care data sharing. Thematic analyses identified six themes under hopes: enablement
AU - Olivia,L
AU - Roberts,L
AU - Jonathan,R G
AU - Pip,B
AU - Lenny,N
AU - Kelsey,M F
AU - Anna,L-J
AU - Saira,G
AU - Ara,D
AU - Neves,AL
DO - 10.2196/22744
PY - 2021///
SN - 1438-8871
TI - “Opening a Can of Worms” - exploring public hopes and fears on healthcare data sharing: qualitative study
T2 - Journal of Medical Internet Research
UR -
UR -
VL - 23
ER -