Introduction

Clinical outcomes in cancer are defined by the various systems at play in the patient’s journey. In addition to the impacts of genetics and environmental exposures on cancer, increasing attention is being given to social determinants of health (SDOH) as factors in cancer morbidity and mortality. These ‘systems’ factors for cancer screening and prevention protocols are still underappreciated. Digital tools and improved data collection in clinicogenomic registries across the patient journey have potential to enable better understanding of these ‘systems’ factors.

Documenting the cancer patient journey is challenging, especially before a diagnosis or after treatment is concluded. We offer four grand challenges to clinicians, researchers, educators and policy makers that impede acquisition of a full picture of the patient journey and greatly limit cancer prevention strategies: 1) fragmentation in care, 2) suboptimal biobanking consent process, 3) limited understanding of how non-tumor biospecimens relate to tumors, and 4) lack of standardized documentation of non-biological determinants of cancer such as social, economic, geographic, environmental, and occupational influences.

Methods

First, cancer care fragmentation derives from a lack of an integrated electronic medical record system across different healthcare platforms, leading to inferior patient care due in part to the incomplete view of the patient journey. Approaches to create a centralized point for patient information have had limited success. The Healthcare Delivery Research Program that was developed by the National Cancer Institute strives to find a solution to cancer care fragmentation. 

Second, the ideal approach to biobanking consent remains controversial amongst investigators and bioethicists. Broad consent is currently the most used biobanking consent model, but its use has triggered an ethical debate among the clinical research community because it leads to passive participation. While dynamic re-consenting has been evaluated as a solution, it has unique practical limitations. 

Third, a better understanding of the pathway from non-tumor biospecimen, such as precancerous lesions (as often seen when harvesting cervical and oral lesions, liquid biopsies, and genetic risk markers) to invasive cancer, can rationalize surveillance, screening, prevention, and treatment. Precancer atlases allow a way to visually and interpret disease pathways and enables clinicians to intercept cancer at early stages. Multicancer detection tests that allow early detection of cancer can help prevent or combat cancers at earlier stages, however the uses and validation of many of these tests are constrained by the challenges that limit multisite, randomized clinical trials (RCTs). 

Fourth, non-biological determinants of cancer such as psycho-social, occupational, economic, and environmental factors can have a significant impact on cancer outcomes. Yet, a scarcity in the proper documentation of such determinants in a patient’s clinic notes constrains rigorous study of the complex interactions between these determinants. 

Results

Claims data are available from across the provider ecosystem and can inform on disease burden, severity, and progression, albeit with limitations. The development of a digital biobank consent process using digital ledgers, such as Web 3.0, that is convenient to both parties and that affords ethical protections, holds promise for a more patient-centric biobank.  Biobanks from cancer screening populations can help justify these large investments in RCTs. Natural language processing systems can assist in the extraction of these determinants from clinic notes, with validated protocols and data standardization in the clinical record empowering rigorous meta-analysis.

Conclusion

These four grand challenges in cancer care can benefit from the use of digital technologies to better document the patient journey from screening, diagnosis, treatment, and recovery.