Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

M Aitken, J de St. Jorre, C Pagliari, R Jepson… - BMC medical …, 2016 - Springer
Background The past 10 years have witnessed a significant growth in sharing of health data
for secondary uses. Alongside this there has been growing interest in the public …

Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

S Kalkman, J Van Delden, A Banerjee, B Tyl… - Journal of medical …, 2022 - jme.bmj.com
Introduction International sharing of health data opens the door to the study of the so-called
'Big Data', which holds great promise for improving patient-centred care. Failure of recent …

Systematic review of participants' attitudes towards data sharing: a thematic synthesis

N Howe, E Giles, D Newbury-Birch… - Journal of health …, 2018 - journals.sagepub.com
Objectives Data sharing is well established in biological research, but evidence on sharing
of clinical trial or public health research study data remains limited, in particular studies of …

A systematic review of barriers to data sharing in public health

WG Van Panhuis, P Paul, C Emerson, J Grefenstette… - BMC public health, 2014 - Springer
Background In the current information age, the use of data has become essential for
decision making in public health at the local, national, and global level. Despite a global …

[HTML][HTML] “Giving something back”: a systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the …

J Stockdale, J Cassell, E Ford - Wellcome open research, 2018 - ncbi.nlm.nih.gov
Background: Use of patients' medical data for secondary purposes such as health research,
audit, and service planning is well established in the UK. However, the governance …

Research use of linked health data—a best practice protocol

CW Kelman, AJ Bass, CDJ Holman - Australian and New Zealand journal of …, 2002 - Elsevier
Objective: This article outlines a protocol for facilitating access to administrative data for the
purpose of health services research, when these data are sourced from multiple …

Responsible data sharing in international health research: a systematic review of principles and norms

S Kalkman, M Mostert, C Gerlinger, JJM van Delden… - BMC medical …, 2019 - Springer
Background Large-scale linkage of international clinical datasets could lead to unique
insights into disease aetiology and facilitate treatment evaluation and drug development …

[HTML][HTML] Are we ready to share qualitative research data? Knowledge and preparedness among qualitative researchers, IRB members, and data repository curators

J Mozersky, H Walsh, M Parsons, T McIntosh… - IASSIST …, 2020 - ncbi.nlm.nih.gov
Data sharing maximizes the value of data, which is time and resource intensive to collect.
Major funding bodies in the United States (US), like the National Institutes of Health (NIH) …

Views of ethical best practices in sharing individual-level data from medical and public health research: a systematic scoping review

S Bull, N Roberts, M Parker - Journal of Empirical Research …, 2015 - journals.sagepub.com
There is increasing support for sharing individual-level data generated by medical and
public health research. This scoping review of empirical research and conceptual literature …

Avoiding data dumpsters—toward equitable and useful data sharing

L Merson, O Gaye, PJ Guerin - New England Journal of Medicine, 2016 - Mass Medical Soc
Avoiding Data Dumpsters — Toward Equitable and Useful Data Sharing | New England Journal of
Medicine Skip to main content The New England Journal of Medicine homepage Advanced …