Evidence map›Paper›PMID 29681039›Full record

ArticleYearbook of medical informatics2018

The Safe and Effective Use of Shared Data Underpinned by Stakeholder Engagement and Evaluation Practice.

Andrew Georgiou, Farah Magrabi, Hannele Hyppönen, Zoie Shui-Yee Wong, Pirkko Nykänen, Philip J Scott, Elske Ammenwerth, Michael Rigby

Abstract read
In one paragraph

Article in Yearbook of medical informatics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Principles of research ethics: A research primer for low- and middle-income countries.African journal of emergency medicine : Revue africaine de la medecine d'urgence · 2020
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Andrew GeorgiouMacquarie University, Australian Institute of Health Innovation, Sydney, Australia.
Farah MagrabiMacquarie University, Australian Institute of Health Innovation, Sydney, Australia.
Hannele HyppönenNational Institute for Health and Welfare, Information Department, Helsinki, Finland.
Zoie Shui-Yee WongSt. Luke's International University, Tokyo, Japan.
Pirkko NykänenUniversity of Tampere, Faculty of Natural Sciences, Tampere, Finland.
Philip J ScottUniversity of Portsmouth, Centre for Healthcare Modelling and Informatics, Portsmouth, United Kingdom.
Elske AmmenwerthUMIT, University for Health Sciences, Medical Informatics and Technology, Institute of Medical Informatics, Hall in Tyrol, Austria.
Michael RigbyKeele University, School of Social Science and Public Policy, Keele, United Kingdom.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesThe paper draws attention to: i) key considerations involving the confidentiality, privacy, and security of shared data; and ii) the requirements needed to build collaborative arrangements encompassing all stakeholders with the goal of ensuring safe, secure, and quality use of shared data.

methodA narrative review of existing research and policy approaches along with expert perspectives drawn from the International Medical Informatics Association (IMIA) Working Group on Technology Assessment and Quality Development in Health Care and the European Federation for Medical Informatics (EFMI) Working Group for Assessment of Health Information Systems.

resultsThe technological ability to merge, link, re-use, and exchange data has outpaced the establishment of policies, procedures, and processes to monitor the ethics and legality of shared use of data. Questions remain about how to guarantee the security of shared data, and how to establish and maintain public trust across large-scale shared data enterprises. This paper identifies the importance of data governance frameworks (incorporating engagement with all stakeholders) to underpin the management of the ethics and legality of shared data use. The paper also provides some key considerations for the establishment of national approaches and measures to monitor compliance with best practice.

conclusionData sharing endeavours can help to underpin new collaborative models of health care which provide shared information, engagement, and accountability amongst all stakeholders. We believe that commitment to rigorous evaluation and stakeholder engagement will be critical to delivering health data benefits and the establishment of collaborative models of health care into the future.

Indexed as

Information DisseminationComputer SecurityConfidentialityEvidence-Based PracticeHumansMedical InformaticsOrganizational PolicyPrivacySocieties, Medical

Identifiers

PMID29681039
PMCPMC6115216

What OpenQuestion holds

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LicenceCC BY-NC-ND
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.