Personalized education and coaching could lower barriers to precision cancer care for historically underrepresented patients
Study Title: Persistent patient barriers to genomic testing in ambulatory oncology
Publication: AACR Abstract, Poster Session, Tuesday, April 18, 2023, 1:30 pm - 5:00 pm
Dana-Farber Cancer Institute author: Nadine Jackson McCleary, MD, MPH; Ellana Haakenstad, MPH
Tumor genomic testing and cancer clinical trial enrollment provide key access to precision cancer therapeutics and supportive care options. Certain populations of people, such as Black, Indigenous, People of Color, and people with low income, have been historically underrepresented in genomic studies and clinical trials. These populations also tend to be the most negatively impacted by a cancer diagnosis. To understand the barriers to accessing these cancer care options, researchers at Dana-Farber interviewed 16 patients diagnosed with cancer who were being seen at an ambulatory care center. The patients identified as Black, Hispanic/Latinx, another race, over 70 years old, having a primary language other than English, or living in a low-income zip code (less than $50,000/year). The researchers asked about barriers to genomic testing of tumors because eligibility for precision medicine and clinical trial enrollment often require tumor genomic testing. Based on the interviews, the researchers identified three barriers to tumor genomic testing: education, including uncertainty about the benefits or the procedure; mistrust of research, specifically concerns about data privacy; and logistics, such as cost, time away from work, and travel. The researchers identified the same barriers for participation in clinical trials. They also found that many patients were uncertain if they’d received tumor genomic testing or if it was recommended, citing the use of confusing medical terms and information overload. Those who did participate in a clinical trial appreciated the additional support and clinical monitoring. When genomic testing and a cancer clinical trial were presented as the best course of care, patients were emphatically interested, though they still had concerns about side effects. The research suggests that these barriers might be lowered with personalized education, coaching, and referral to supportive resources.
Cancer disparities are well documented in the US among historically underrepresented patients. Access to precision medicine could reduce disparities, but historically underrepresented patients are less likely to receive tumor genomic testing or participate in clinical trials, both of which provide access to precision medicine. This new research suggests that personalized education, coaching and supportive resources could improve access to precision medicine by lowering the barriers to tumor genomic testing and clinical trial enrollment.
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