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Evaluating Patient Experience with Genomic Medicine: A Content Analysis of Public-Facing Websites for NCI-Designated Cancer Centers
ABSTRACT
Background:
NCI-designated cancer centers (NCI-CCs) throughout the U.S. are mandated to translate state-of-the-art cancer research to communities and enhance clinical care for patients within their catchment areas. In this era of targeted personalized care, though genetics has been incorporated into cancer centers, it is unknown how these innovations are being communicated to the public and communities served. There is particularly limited knowledge surrounding how NCI-CCs may integrate patient reported experiences with genomics to fulfill their overall mission and reduce cancer health disparities.
Objective:
The objective of this study was to evaluate how NCI-CCs are publicly sharing information related to their work in understanding and assessing patient experiences with the use of genetics to guide cancer care.
Methods:
For all NCI-CCs providing clinical care (n=65), we conducted a review of publicly available and published information and assessed 5 domains across personalized medicine and patient experience.
Results:
While almost all the NCI-CCs discuss providing personalized care and performing genetic testing, we found that only about 58% indicate that they assess patient-reported outcomes (PROs) and/or other patient experience measures with genomic medicine. Fewer (38%) indicated having at least one evaluation of patient experiences with genomic medicine that captured broader types of information beyond PROs, such as measures of patient education or care team communication. Finally, about 1 in 3 NCI-CCs (35%) indicated having established infrastructure with departmental resources dedicated to monitoring patient experience. These centers reflecting a built-in infrastructure were 8 to 12% more likely to publicly communicate targeted activities to assess patient experiences with genomic medicine.
Conclusions:
With the burgeoning use of genomics in research and clinical care, comprehensive evaluation, and incorporation of patient experience with genomic medicine is lagging and serves as a key opportunity to enhance cancer care.
Citation
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Copyright
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