Payer coverage for hereditary cancer panels: Barriers, opportunities, and implications for the precision medicine initiative

Julia R. Trosman, Christine B. Weldon, Michael P. Douglas, Allison W. Kurian, R. Kate Kelley, Patricia A. Deverka, Kathryn A. Phillips

Research output: Contribution to journalArticle

Abstract

Hereditary cancer panels (HCPs), testing for multiple genes and syndromes, are rapidly transforming cancer risk assessment but are controversial and lack formal insurance coverage. We aimed to identify payers' perspectives on barriers to HCP coverage and opportunities to address them. Comprehensive cancer risk assessment is highly relevant to the Precision Medicine Initiative (PMI), and payers' considerations could inform PMI's efforts. We describe our findings and discuss them in the context of PMI priorities. Methods: We conducted semi-structured interviews with 11 major US payers, covering >160 million lives. We used the framework approach of qualitative research to design, conduct, and analyze interviews, and used simple frequencies to further describe findings. Results: Barriers to HCP coverage included poor fit with coverage frameworks (100%); insufficient evidence (100%); departure from pedigree/family history-based testing toward genetic screening (91%); lacking rigor in the HCP hybrid research/clinical setting (82%); and patient transparency and involvement concerns (82%). Addressing barriers requires refining HCP-indicated populations (82%); developing evidence of actionability (82%) and pathogenicity/penetrance (64%); creating infrastructure and standards for informing and recontacting patients (45%); separating research from clinical use in the hybrid clinical-research setting (44%); and adjusting coverage frameworks (18%). Conclusions: Leveraging opportunities suggested by payers to address HCP coverage barriers is essential to ensure patients' access to evolving HCPs. Our findings inform 3 areas of the PMI: addressing insurance coverage to secure access to future PMI discoveries; incorporating payers' evidentiary requirements into PMI's research agenda; and leveraging payers' recommendations and experience to keep patients informed and involved.

Original languageEnglish (US)
Pages (from-to)219-228
Number of pages10
JournalJNCCN Journal of the National Comprehensive Cancer Network
Volume15
Issue number2
DOIs
StatePublished - Feb 1 2017
Externally publishedYes

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Precision Medicine
Neoplasms
Insurance Coverage
Research
Interviews
Penetrance
Qualitative Research
Genetic Testing
Pedigree
Virulence
Research Design

ASJC Scopus subject areas

  • Oncology

Cite this

Payer coverage for hereditary cancer panels : Barriers, opportunities, and implications for the precision medicine initiative. / Trosman, Julia R.; Weldon, Christine B.; Douglas, Michael P.; Kurian, Allison W.; Kelley, R. Kate; Deverka, Patricia A.; Phillips, Kathryn A.

In: JNCCN Journal of the National Comprehensive Cancer Network, Vol. 15, No. 2, 01.02.2017, p. 219-228.

Research output: Contribution to journalArticle

Trosman, Julia R. ; Weldon, Christine B. ; Douglas, Michael P. ; Kurian, Allison W. ; Kelley, R. Kate ; Deverka, Patricia A. ; Phillips, Kathryn A. / Payer coverage for hereditary cancer panels : Barriers, opportunities, and implications for the precision medicine initiative. In: JNCCN Journal of the National Comprehensive Cancer Network. 2017 ; Vol. 15, No. 2. pp. 219-228.
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abstract = "Hereditary cancer panels (HCPs), testing for multiple genes and syndromes, are rapidly transforming cancer risk assessment but are controversial and lack formal insurance coverage. We aimed to identify payers' perspectives on barriers to HCP coverage and opportunities to address them. Comprehensive cancer risk assessment is highly relevant to the Precision Medicine Initiative (PMI), and payers' considerations could inform PMI's efforts. We describe our findings and discuss them in the context of PMI priorities. Methods: We conducted semi-structured interviews with 11 major US payers, covering >160 million lives. We used the framework approach of qualitative research to design, conduct, and analyze interviews, and used simple frequencies to further describe findings. Results: Barriers to HCP coverage included poor fit with coverage frameworks (100{\%}); insufficient evidence (100{\%}); departure from pedigree/family history-based testing toward genetic screening (91{\%}); lacking rigor in the HCP hybrid research/clinical setting (82{\%}); and patient transparency and involvement concerns (82{\%}). Addressing barriers requires refining HCP-indicated populations (82{\%}); developing evidence of actionability (82{\%}) and pathogenicity/penetrance (64{\%}); creating infrastructure and standards for informing and recontacting patients (45{\%}); separating research from clinical use in the hybrid clinical-research setting (44{\%}); and adjusting coverage frameworks (18{\%}). Conclusions: Leveraging opportunities suggested by payers to address HCP coverage barriers is essential to ensure patients' access to evolving HCPs. Our findings inform 3 areas of the PMI: addressing insurance coverage to secure access to future PMI discoveries; incorporating payers' evidentiary requirements into PMI's research agenda; and leveraging payers' recommendations and experience to keep patients informed and involved.",
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