Evidence map›Paper›PMID 32923887›Full record

ArticleJCO precision oncology2020

Engaging Patients in Precision Oncology: Development and Usability of a Web-Based Patient-Facing Genomic Sequencing Report.

Ilana B Solomon, Sarah McGraw, Jenny Shen, Adem Albayrak, Gil Alterovitz, Melanie Davies, Catherine Del Vecchio Fitz, Rachel A Freedman, Lisa N Lopez, Lynette M Sholl and 7 more

Open access · bronzeAbstract read
In one paragraph

Article in JCO precision oncology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed
2.2field-weighted citation impact, top 13% 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

10 citing papers in PubMed, 18 citations in OpenAlex.

  1. Review
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  4. Preparing for the unexpected: Recommendations for returning secondary findings in late-stage cancer care.Genetics in medicine : official journal of the American College of Medical Genetics · 2024
    Article
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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

17 authors at 7 institutions in 1 country.

Ilana B SolomonUSC Norris Comprehensive Cancer Center, University of Southern California, Los Angeles, CA.
Sarah McGrawThe Hastings Center, Garrison, NY.
Jenny ShenDepartment of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA.
Adem AlbayrakHealth Catalyst, Salt Lake City, UT.
Gil AlterovitzHarvard Medical School, Boston, MA.
Melanie DaviesDepartment of Informatics and Analytics, Dana-Farber Cancer Institute, Boston, MA.
Catherine Del Vecchio FitzHealth Catalyst, Salt Lake City, UT.
Rachel A FreedmanHarvard Medical School, Boston, MA.
Lisa N LopezDepartment of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA.
Lynette M ShollHarvard Medical School, Boston, MA.
Eliezer Van AllenHarvard Medical School, Boston, MA.
Joanne MortimerDepartment of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA.
Marwan FakihDepartment of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA.
Sumanta PalDepartment of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA.
Karen L ReckampDepartment of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA.
Yuan YuanDepartment of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA.
Stacy W GrayDepartment of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA.
City of Hope · USCommunity Catalyst · USDana-Farber Cancer Institute · USHarvard University · USHastings Center · USMassachusetts Institute of Technology · USUniversity of Southern California · US

Funding

Empowering Cancer Patients Through Innovations in Information Technology-Based Reporting of Precision MedicineR21HS024984 · AHRQ · BECKMAN RESEARCH INSTITUTE/CITY OF HOPE · PI GRAY, STACY W. · 2016 to 2017
$300k
AHRQ HHS R21 HS024984
6 · The paper itself

Abstract

purposeEvidence-based somatic and germline sequencing has transformed cancer care and improves patient outcomes. However, patients' low genetic literacy and misunderstanding of their own genomic results poses a threat to the realization of precision oncology. To optimize patient genomic comprehension, we developed a Web-based, patient-directed, genomic sequencing education and return-of-results tool, HOPE-Genomics.

methodsThe HOPE-Genomics prototype included somatic and germline sequencing results, embedded multimedia genomic education, and interactive features (eg, request for genetic counseling). Between January and April 2018, we elicited feedback on tool usability and comprehensiveness through participant surveys, 4 focus groups of patients with cancer and their family members, and 3 provider focus groups (comprising 8 patients, 5 family members, and 19 providers).

resultsWe identified themes in patient/family tool-related responses, including the desire to view a patient-friendly report, a desire to receive multiple types of genomic information (eg, prognostic and uncertain), high acceptability of report content, and interest in tool-enabled access to genetic counseling. Major themes from the clinician focus groups included believing the tool could help patients formulate questions and facilitate patients' communication of results to family members. However, there were diverse responses from all participants in terms of tool implementation (ie, timing and nature of report release). Some participants preferred report release before meeting with the provider, and others preferred it during the appointment. Additionally, some clinicians were concerned about providing prognostic and treatment information through the tool.

conclusionThere was high acceptability and interest from patients, family members, and providers in a patient-directed genomics report. Future work will determine whether direct-to-patient reporting of genomic results improves patient knowledge, care engagement, and compliance with genomically guided interventions.

Identifiers

PMID32923887
PMCPMC7446413
OpenAlexW3016777223

What OpenQuestion holds

Textmetadata
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.