Evidence map›Paper›PMID 34161986›Full record

ArticleApplied clinical informatics2021

Lessons Learned for Identifying and Annotating Permissions in Clinical Consent Forms.

Elizabeth E Umberfield, Yun Jiang, Susan H Fenton, Cooper Stansbury, Kathleen Ford, Kaycee Crist, Sharon L R Kardia, Andrea K Thomer, Marcelline R Harris

Abstract read
In one paragraph

Article in Applied clinical informatics, 2021. 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. Pediatric Consent on FHIR.Applied clinical informatics · 2024
    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

9 authors.

Elizabeth E UmberfieldHealth Policy & Management, Indiana University Richard M Fairbanks School of Public Health, Indianapolis, Indiana, United States.
Yun JiangDepartment of Systems, Populations and Leadership, University of Michigan School of Nursing, Ann Arbor, Michigan, United States.
Susan H FentonSchool of Biomedical Informatics, University of Texas Health Science Center, Houston, Texas, United States.
Cooper StansburyDepartment of Computational Medicine and Bioinformatics, University of Michigan Medical School, Ann Arbor, Michigan, United States.
Kathleen FordDepartment of Systems, Populations and Leadership, University of Michigan School of Nursing, Ann Arbor, Michigan, United States.
Kaycee CristRory Meyers School of Nursing, New York University, New York, New York, United States.
Sharon L R KardiaDepartment of Epidemiology, University of Michigan School of Public Health, Ann Arbor, Michigan, United States.
Andrea K ThomerUniversity of Michigan School of Information, Ann Arbor, Michigan, United States.
Marcelline R HarrisDepartment of Systems, Populations and Leadership, University of Michigan School of Nursing, Ann Arbor, Michigan, United States.

Funding

The Indiana Training Program in Public & Population Health InformaticsT15LM012502 · NLM · INDIANA UNIVERSITY INDIANAPOLIS · PI Brian E. Dixon, William F Fadel · 2017 to 2026
$4.7M
Training Program in BioinformaticsT32GM070449 · NIGMS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI ATHEY, BRIAN DAVID, BURMEISTER, MARGIT · 2005 to 2020
$3.6M
Metadata applications on informed content to facilitate biorepository data regulation and sharingU01HG009454 · NHGRI · UNIVERSITY OF TEXAS HLTH SCI CTR HOUSTON · PI TAO, CUI · 2016 to 2018
$1.4M
NHGRI NIH HHS U01 HG009454NIGMS NIH HHS T32 GM070449NLM NIH HHS T15 LM012502
6 · The paper itself

Abstract

backgroundThe lack of machine-interpretable representations of consent permissions precludes development of tools that act upon permissions across information ecosystems, at scale.

objectivesTo report the process, results, and lessons learned while annotating permissions in clinical consent forms.

methodsWe conducted a retrospective analysis of clinical consent forms. We developed an annotation scheme following the MAMA (Model-Annotate-Model-Annotate) cycle and evaluated interannotator agreement (IAA) using observed agreement (

resultsThe final dataset included 6,399 sentences from 134 clinical consent forms. Complete agreement was achieved for 5,871 sentences, including 211 positively identified and 5,660 negatively identified as permission-sentences across all three annotators (

conclusionOur findings point to the complexity of identifying permission-sentences within the clinical consent forms. We present our results in light of lessons learned, which may serve as a launching point for developing tools for automated permission extraction.

Indexed as

Consent FormsRetrospective Studies

Identifiers

PMID34161986
PMCPMC8221844

What OpenQuestion holds

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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.