Evidence map›Paper›PMID 36251350›Full record

ArticleJMIR formative research2022

An Accessible Communication System for Population-Based Genetic Testing: Development and Usability Study.

Tara Coffin, Deborah Bowen, Elizabeth Swisher, Karen Lu, Nadine Rayes, Barbara Norquist, Stephanie Blank, Douglas Levine, Jamie Bakkum-Gamez, Gini Fleming and 10 more

Open access · goldAbstract read
In one paragraph

Article in JMIR formative research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
0.9field-weighted citation impact, top 24% 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

0 citing papers in PubMed, 5 citations in OpenAlex.

No citing paper in PubMed yet.

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

20 authors at 7 institutions in 1 country.

Tara CoffinUniversity of Washington, Seattle, WA, United States.ORCID https://orcid.org/0000-0003-1446-5792
Deborah BowenUniversity of Washington, Seattle, WA, United States.ORCID https://orcid.org/0000-0002-5177-8520
Elizabeth SwisherUniversity of Washington, Seattle, WA, United States.ORCID https://orcid.org/0000-0003-2331-0434
Karen LuMD Anderson Cancer Center, Houston, TX, United States.ORCID https://orcid.org/0000-0002-5317-9927
Nadine RayesMD Anderson Cancer Center, Houston, TX, United States.ORCID https://orcid.org/0000-0002-8580-6075
Barbara NorquistUniversity of Washington, Seattle, WA, United States.ORCID https://orcid.org/0000-0001-5992-7845
Stephanie BlankMount Sinai Medical Center, New York, NY, United States.ORCID https://orcid.org/0000-0002-5333-9484
Douglas LevineNYU Langone Health, New York, NY, United States.ORCID https://orcid.org/0000-0003-1038-8232
Jamie Bakkum-GamezMayo, Rochester, MN, United States.ORCID https://orcid.org/0000-0001-7018-8625
Gini FlemingUniversity of Chicago, Chicago, IL, United States.ORCID https://orcid.org/0000-0003-2845-4023
Olufunmilayo OlopadeUniversity of Chicago, Chicago, IL, United States.ORCID https://orcid.org/0000-0002-9936-1599
Alan D'AndreaHarvard, Cambridge, MA, United States.ORCID https://orcid.org/0000-0001-6168-6294
Denise NebgenMD Anderson Cancer Center, Houston, TX, United States.ORCID https://orcid.org/0000-0003-0576-3368
Christine PetersonMD Anderson Cancer Center, Houston, TX, United States.ORCID https://orcid.org/0000-0003-3316-0468
Mark MunsellMD Anderson Cancer Center, Houston, TX, United States.ORCID https://orcid.org/0000-0001-9654-4958
Kathleen GavinMinnesota Ovarian Cancer Alliance, Minneapolis, MN, United States.ORCID https://orcid.org/0000-0001-8935-5358
Rebecca LechnerMinnesota Ovarian Cancer Alliance, Minneapolis, MN, United States.ORCID https://orcid.org/0000-0002-3809-6103
Jamie CraseUniversity of Washington, Seattle, WA, United States.ORCID https://orcid.org/0000-0003-0857-4650
Deborah PolinskySHARE, New York City, NY, United States.ORCID https://orcid.org/0000-0002-7311-5752
Iris RomeroUniversity of Chicago, Chicago, IL, United States.ORCID https://orcid.org/0000-0001-5849-5024
The University of Texas MD Anderson Cancer Center · USUniversity of Washington · USUniversity of Chicago · USMinnesota Ovarian Cancer Alliance · USMount Sinai Medical Center · USNYU Langone Health · USSHARE · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundGenetic testing uptake is low, despite the well-established connection between pathogenic variants in certain cancer-linked susceptibility genes and ovarian cancer risk. Given that most major insurers cover genetic testing for those with a family history suggestive of hereditary cancer, the issue may lie in access to genetic testing. Remotely accessible web-based communication systems may improve awareness, and uptake, of genetic testing services.

objectiveThis study aims to present the development and formative evaluation of the multistep web-based communication system required to support the implementation of, and access to, genetic testing.

methodsWhile designing the multistep web-based communication system, we considered various barriers and facilitators to genetic testing, guided by dimensions of accessibility. In addition to conducting usability testing, we performed ongoing assessments focusing on the function of the web-based system and participant response rates, with the goal of continuing to make modifications to the web-based communication system as it is in use.

resultsThe combined approach of usability testing and expert user experience consultation resulted in several modifications to the multistep web-based communication system, including changes that related to imagery and content, web accessibility, and general organization of the web-based system. All recommendations were made with the goal of improving the overall accessibility of the web-based communication system.

conclusionsA multistep web-based communication system appears to be an effective way to address many potential barriers to access, which may otherwise make genetic testing difficult for at-risk individuals to participate in. Importantly, some dimensions of access were easy to assess before study recruitment, but other aspects of the communication system required ongoing assessment during the implementation process of the Making Genetic Testing Accessible study.

Indexed as

accessibilitygenetic testinginternetsocial media

Identifiers

PMID36251350
PMCPMC9623457
OpenAlexW4210776274

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.