Evidence map›Paper›PMID 37363125›Full record

ReviewResuscitation plus2023

Data-driven sudden cardiac arrest research in Europe: Experts' perspectives on ethical challenges and governance strategies.

Marieke A R Bak, Jelle C H Vroonland, Marieke T Blom, Domagoj Damjanovic, Dick L Willems, Hanno L Tan, M Corrette Ploem

Open access · goldAbstract readReview
In one paragraph

Review in Resuscitation plus, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed, 1 pooled it
1.7field-weighted citation impact, top 16% of its field
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

3 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.

  1. Pooled it
  2. Article
  3. 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

7 authors at 5 institutions in 2 countries.

Marieke A R BakDepartment of Ethics, Law and Humanities, Amsterdam UMC, University of Amsterdam, The Netherlands.
Jelle C H VroonlandAthena Institute, Faculty of Science, VU University, Amsterdam, The Netherlands.
Marieke T BlomDepartment of Experimental Cardiology, Heart Center, Amsterdam UMC, University of Amsterdam, The Netherlands.
Domagoj DamjanovicDepartment of Cardiovascular Surgery, University Medical Center Freiburg, Faculty of Medicine, University of Freiburg, Germany.
Dick L WillemsDepartment of Ethics, Law and Humanities, Amsterdam UMC, University of Amsterdam, The Netherlands.
Hanno L TanDepartment of Experimental Cardiology, Heart Center, Amsterdam UMC, University of Amsterdam, The Netherlands.
M Corrette PloemDepartment of Ethics, Law and Humanities, Amsterdam UMC, University of Amsterdam, The Netherlands.
Amsterdam University Medical Centers · NLAmsterdam UMC Location Vrije Universiteit Amsterdam · NLGGD Amsterdam · NLNetherlands Heart Institute · NLUniversity of Freiburg · DE

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Observational studies using large-scale databases and biobanks help improve prevention and treatment of sudden cardiac arrest (SCA) but the lack of guidance on data protection issues in this setting may harm patients' rights and the research enterprise itself. This qualitative study explored the ethical aspects of observational SCA research, as well as solutions. Methods: European experts in SCA research, medical ethics and health law reflected on this topic through semi-structured interviews ( Results: The first theme concerned the potential benefits and harms (at individual and group level) of observational data-based SCA studies and included the following sub-themes: societal value, scientific validity, data privacy, disclosure of genetic findings, stigma and discrimination, and medicalisation of sudden death. The second theme involved governance through 'privacy by design', 'privacy by policy' and associated regulation and oversight. Sub-themes were: de-identification of data, informed consent (broad and deferred), ethics review, and harmonisation. Conclusions: Researchers and scientific societies should be aware that ethico-legal issues may arise during data-driven studies in SCA and other emergencies. These can be mitigated by combining technical data protection safeguards with appropriate informed consent policies and proportional ethics oversight. To ensure responsible conduct of data research in emergency medicine, we recommend the establishment of 'codes of conduct' which should be developed in interdisciplinary groups and together with patient representatives.

Indexed as

Big dataBiobankData protectionESCAPE-NETGeneticsObservational studiesOut-of-hospital cardiac arrestResearch ethicsSudden cardiac arrestSudden cardiac death

Identifiers

PMID37363125
PMCPMC10285638
OpenAlexW4380925687

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

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.