Dear Editor,
We appreciate Drs. Buiting and Bolt for their insightful letter regarding the unique primary care needs of cancer survivors. They raise excellent points about how these needs differ among survivors who are in different phases of the disease, and we agree that disease phase information is vital for optimizing primary care in this population. For example, optimal primary care for a post-treatment survivor of early stage cancer will vary tremendously from one undergoing curative cancer treatment or for one undergoing palliative care for advanced disease.
Electronic health record (EHR) systems in community health centers (CHCs) are often missing pertinent information regarding patients’ cancer history, especially the date and stage of diagnosis and treatment history, making it difficult to determine of a patient’s phase of cancer survivorship from this data source. Future work should perform data linkages with state cancer registries, to compare the level and accuracy of cancer information available in CHC EHR systems versus the ‘gold standard’ of state surveillance systems. We expect that the discrepancies between these two systems will speak to the limits of the primary care EHR for containing information that primary care providers (PCPs) need to provide optimal care for patients at different phases of cancer survivorship, making the need for care plans even more apparent.
Drs. Buiting and Bolt point out that many patients do not wish to involve their PCPs during cancer treatment. However, in the US setting where health care is fragmented and access to care is not equally guaranteed across the population, this observation may be less common. CHC patients are largely uninsured or publicly insured and low-income, and, compared to the insured, more affluent US population, have been found to see specialists less often1 and face increased obstacles to finding and affording cancer-related care.2–3 It is possible that CHC patients may therefore remain more closely connected to their PCPs during cancer treatment, and/or may return to the primary care setting more quickly after a diagnosis than in non-CHC settings. For these reasons, we would argue that it is vital for CHC PCPs to have complete access to accurate cancer history data, even during treatment phases when patients are more involved with oncology providers.
In conclusion, we agree that cancer disease and survivorship phase matters greatly in providing optimal primary care. With this information, we call for continued technological innovations to facilitate the availability of relevant cancer history data within primary care EHRs, which will ultimately improve person-centered care for all cancer survivors.
Two concise sentences that state the significant conclusions or message of the manuscript
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Primary care EHRs in the US do not currently have adequate data to distinguish between phases of cancer disease and survivorship.
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Linkages to central cancer registries and information technology improvements could help tailor care to patients in different disease phases.
Acknowledgments
Funding: This work was supported by grant number 1R01CA204267–01 from the National Cancer Institute at the National Institutes of Health.
Footnotes
Conflict of interest: The authors have no conflicts of interest to declare.
References
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