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Cancer

Publicly Available Information on Genomic Medicine Lacking at Cancer Centers

Strategic Insights

— 1 min read

A recent study published in the JMIR Cancer journal has found that publicly available information on genomic medicine at National Cancer Institute-designated cancer centers (NCI-CCs) in the United States is often lacking. Despite efforts to provide personalized care and incorporate genetic testing, many centers fail to publicly communicate their efforts to integrate patient-reported experiences with genomics. The study aimed to evaluate how NCI-CCs publicly share information on their websites related to cancer center programming and activities to measure and incorporate patients' experiences with the use of genetics to guide cancer care.

Key Takeaways:

  • 98% of NCI-CCs discussed providing personalized care and performing genetic testing on their websites.
  • 58% of NCI-CCs indicated online that they assessed patient-reported outcomes (PROs) or other patient experience measures with genomic medicine.
  • Fewer centers (25/65, 38%) discussed on their websites having a mechanism for evaluating patients' experiences with genomic medicine that captured broader types of information beyond PROs.
  • Approximately 1 in 3 NCI-CCs (23/65, 35%) indicated having an established infrastructure with departmental resources dedicated to monitoring patients' experiences.
  • These centers reflecting a built-in infrastructure were 8% to 12% more likely to publicly communicate targeted activities to assess patients' experiences with genomic medicine.

Statistics:

  • 64 out of 65 NCI-CCs (98%) discussed providing personalized care and performing genetic testing on their websites.
  • 38 out of 65 (58%) NCI-CCs indicated online that they assessed PROs or other patient experience measures with genomic medicine.
  • 25 out of 65 (38%) NCI-CCs discussed on their websites having a mechanism for evaluating patients' experiences with genomic medicine that captured broader types of information beyond PROs.
  • 23 out of 65 (35%) NCI-CCs indicated having an established infrastructure with departmental resources dedicated to monitoring patients' experiences.

Sources:

  • NewsRx. New Findings in Personalized Medicine Described from University of Chicago (Evaluating Patient Experience With Genomic Medicine: A Content Analysis of National Cancer Institute-Designated Cancer Centers' Websites). Cancer Weekly. November 4, 2025; p 1148.
  • JMIR Cancer. Evaluating Patient Experience With Genomic Medicine: A Content Analysis of National Cancer Institute-Designated Cancer Centers' Websites. 2025;11.

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