Evidence map›Paper›PMID 27037699›Full record

ArticleJournal of cancer education : the official journal of the American Association for Cancer Education2017

Development of Plain Language Supplemental Materials for the Biobank Informed Consent Process.

Bettina F Drake, Katherine M Brown, Sarah Gehlert, Leslie E Wolf, Joann Seo, Hannah Perkins, Melody S Goodman, Kimberly A Kaphingst

Open access · greenAbstract read
In one paragraph

Article in Journal of cancer education : the official journal of the American Association for Cancer Education, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed
3.9field-weighted citation impact, top 6% 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

13 citing papers in PubMed, 24 citations in OpenAlex.

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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 at 4 institutions in 1 country.

Bettina F DrakeDivision of Public Health Sciences, Washington University in St. Louis School of Medicine, St. Louis, MO, 63110, USA. drakeb@wudosis.wustl.edu.
Katherine M BrownDivision of Public Health Sciences, Washington University in St. Louis School of Medicine, St. Louis, MO, 63110, USA.
Sarah GehlertDivision of Public Health Sciences, Washington University in St. Louis School of Medicine, St. Louis, MO, 63110, USA.
Leslie E WolfCenter for Law Health and Society, Georgia State University College of Law, 85 Park Place NE, Atlanta, GA, 30303, USA.
Joann SeoDivision of Public Health Sciences, Washington University in St. Louis School of Medicine, St. Louis, MO, 63110, USA.
Hannah PerkinsDivision of Public Health Sciences, Washington University in St. Louis School of Medicine, St. Louis, MO, 63110, USA.
Melody S GoodmanDivision of Public Health Sciences, Washington University in St. Louis School of Medicine, St. Louis, MO, 63110, USA.
Kimberly A KaphingstDepartment of Communication, University of Utah, 255 S. Central Campus Dr., Salt Lake City, UT, 84112-0491, USA.
Washington University in St. Louis · USAlvin J. Siteman Cancer CenterGeorgia State University · USUniversity of Utah · US

Funding

Training ProgramU54CA153460 · NCI · WASHINGTON UNIVERSITY · PI COLDITZ, GRAHAM A. · 2010 to 2015
$5.3M
NCI NIH HHS U54 CA153460
6 · The paper itself

Abstract

The US Department of Health and Human Services addresses clear communication in the informed consent process as part of the Notice of Proposed Rulemaking for revisions to the Common Rule. However, prior research has shown that participants may not fully comprehend research studies despite completion of an informed consent process. Our main goal was to provide plain language information about donation processes to a cancer biobank to supplement an informed consent form. We developed and conducted cognitive testing with supplemental brochures that clearly communicated information about three different models for consent (notice, broad and study-specific) to future use of biospecimens. During the brochure development process, we conducted qualitative, semi-structured, individual, in-person cognitive interviews among 14 women to examine participants' perceptions of the brochures. Each participant provided feedback regarding the understandability, graphics and layout, and cultural appropriateness of the brochures. Our findings demonstrate that these methods may be used to tailor consent form brochures, such as the ones developed here, to other populations. This study therefore adds to our understanding of how best to present content to help women from two different racial groups make informed decisions about participation in a cancer biobank.

Indexed as

ComprehensionLanguagePamphletsAdultBiological Specimen BanksBlack or African AmericanFemaleHumansInformed ConsentMiddle AgedUnited StatesWhite PeopleBiorepositoryCancerConsent modelsMinorityPlain language

Identifiers

PMID27037699
PMCPMC5047847
OpenAlexW2328489441

What OpenQuestion holds

Textmetadata
LicenceTDM
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.