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

Affiliations

PMID: 32923887
PMCID: PMC7446413 (available on 2021-04-14)
DOI: 10.1200/PO.19.00195

Abstract

Purpose: Evidence-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.

Methods: The 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).

Results: We 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.

Conclusion: There 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.

Conflict of interest statement

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/po/author-center. Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments). Adem AlbayrakEmployment: Health Catalyst Stock and Other Ownership Interests: Health Catalyst Honoraria: BC Platforms Research Funding: MerckMelanie DaviesEmployment: InterSystems CorporationCatherine Del Vecchio FitzEmployment: Health CatalystRachel A. FreedmanResearch Funding: Puma Biotechnology (Inst), Eisai (Inst)Lynette M. ShollHonoraria: AstraZeneca Consulting or Advisory Role: Loxo Oncology, Foghorn Therapeutics Research Funding: GenentechEliezer Van AllenStock and Other Ownership Interests: Syapse, Tango Therapeutics, Genome Medical, Microsoft, Ervaxx Consulting or Advisory Role: Syapse, Roche, Third Rock Ventures, Takeda, Novartis, Genome Medical, InVitae, Illumina, Tango Therapeutics, Ervaxx Speakers' Bureau: Illumina Research Funding: Bristol-Myers Squibb, Novartis Patents, Royalties, Other Intellectual Property: Patent on discovery of retained intron as source of cancer neoantigens (Inst), patent on discovery of chromatin regulators as biomarkers of response to cancer immunotherapy (Inst), patent on clinical interpretation algorithms using cancer molecular data (Inst) Travel, Accommodations, Expenses: GenentechJoanne MortimerHonoraria: Novartis Consulting or Advisory Role: Novartis, Karyopharm, PumaMarwan FakihConsulting or Advisory Role: Amgen, Array BioPharma, Genentech Speakers' Bureau: Amgen, Taiho Pharmaceutical Research Funding: Novartis (Inst), Amgen (Inst), AstraZeneca (Inst)Sumanta PalConsulting or Advisory Role: Genentech, Aveo, Eisai, Roche, Pfizer, Novartis, Exelixis, Ipsen, BMS, Astellas Consulting or Advisory Role: Pfizer, Novartis, Aveo, Myriad Pharmaceuticals, Genentech, Exelixis, Bristol-Myers Squibb, Astellas Pharma, Ipsen, Eisai Research Funding: MedivationKaren L. ReckampConsulting or Advisory Role: Amgen, AstraZeneca, Boehringer Ingelheim, Calithera Biosciences, Euclises, Genentech, Guardant Health, Precision Health Economics, Seattle Genetics, Takeda, Tesaro Research Funding: AbbVie (Inst), ACEA Biosciences (Inst), Adaptimmune (Inst), Boehringer Ingelheim (Inst), Bristol Myers Squibb (Inst), Genentech (Inst), GlaxoSmithKline (Inst), Guardant Health (Inst), Janssen Oncology (Inst), Loxo Oncology (Inst), Molecular Partners (Inst), Seattle Genetics (Inst), Spectrum (Inst), Takeda (Inst), Xcovery (Inst), Zeno Pharmaceuticals (Inst)Yuan YuanConsulting or Advisory Role: Novartis, Pfizer, Eisai, Genentech, Immunomedics Speakers' Bureau: Eisai, Genentech, Eisai, Pfizer, Merck, Puma Biotechnology, Novartis, Genentech Expert Testimony: NovartisStacy W. GrayStock and Other Ownership Interests: Magenta Therapeutics (I) Consulting or Advisory Role: Grail Industries, Magenta Therapeutics (I) Expert Testimony: Riley and Associates No other potential conflicts of interest were reported.