Evidence map›Paper›PMID 40479265›Full record

ReviewPravention und Gesundheitsforderung2022

[FAIRification of real world data for health research].

Iris Pigeot, Timm Intemann, Bianca Kollhorst, Ulrich Sax, Wolfgang Ahrens

Abstract readEnglish AbstractReview
In one paragraph

Review in Pravention und Gesundheitsforderung, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. 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

5 authors.

Iris PigeotLeibniz-Institut für Präventionsforschung und Epidemiologie - BIPS, Achterstr. 30, 28359 Bremen, Deutschland.ORCID 0000-0001-7483-0726
Timm IntemannLeibniz-Institut für Präventionsforschung und Epidemiologie - BIPS, Achterstr. 30, 28359 Bremen, Deutschland.
Bianca KollhorstLeibniz-Institut für Präventionsforschung und Epidemiologie - BIPS, Achterstr. 30, 28359 Bremen, Deutschland.
Ulrich SaxFachbereich Medizininformatik, Universitätsmedizin Göttingen, Göttingen, Deutschland.
Wolfgang AhrensLeibniz-Institut für Präventionsforschung und Epidemiologie - BIPS, Achterstr. 30, 28359 Bremen, Deutschland.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: The provision of real-world data according to the FAIR principles is prerequisite for an efficient exploitation of the potential of health data for prevention and care. Objectives: To discuss the opportunities and limitations of reuse and record linkage of health data in Germany. Materials and methods: Initiatives to establish an improved research data infrastructure are presented and the limitations that hinder record linkage of personal health data are illustrated using an example. Results: In general, health data in Germany do not meet the requirements of the FAIR principles. Their findability already fails because either no metadata are available or they are not posted in searchable repositories in a standardized way. Record linkage of personal health data is extremely limited by restrictive data protection regulations and the lack of a so-called unique identifier. Privacy-compliant solutions for linking health data, which are successfully practiced in neighboring European countries, could serve as a model here. Conclusions: The establishment of a National Research Data Infrastructure (NFDI), especially for personal health data (NFDI4Health), can only be realized with considerable efforts and legislative changes. Already existing structures and standards that have been for instance developed by the Medical Informatics Initiative and the Netzwerk Universitätsmedizin (English: University Medicine Network), and international initiatives such as the European Open Science Cloud should be taken into consideration.

Indexed as

Data protectionFAIR principlesLinkage of person-related health dataNational Research Data InfrastructureUnique identifier

Identifiers

PMID40479265
PMCPMC9516507

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.