The explosion of data in medicine and the need to manage the information has challenged oncologists and patients. Common internet data and interoperability standards with electronic medical software such as electronic health records (EHRs) have become the glue that holds our patchwork healthcare system together; however, these tools are still perceived as being unable to provide actionable data that are structured, interactive, and both human and machine readable. This is especially true for the many medical specialties within oncology. Seamless interoperability, intelligent workflows, easy navigation, intelligent education with clinical decision support (CDS), and appropriate medical alert notifications should all be goals for improvement.
Given the logarithmic growth of data captured and the merging of information technologies, interoperability standards should be applied to clinical practice, physician reimbursement, quality measurement, outcomes documentation, medical research, governmental regulations, business practices, physician–patient communication, care coordination, and seamless data sharing.
In fact, interoperability standards across the care continuum have become a top priority for all healthcare stakeholders. Oncology surveys, even back in 2006, show that EHRs do well with billing and payment documentation, administration, medical research, and patients’ clinical data.
Table. Industry Tools for Improving the Sharing of Healthcare Data
Regulations have produced excessive amounts of EHR clinical documentation requirements. EHR use has increasingly reduced face-to-face time between patients and doctors and, most critically, fails to provide what has become necessary for an efficient and well-coordinated electronic healthcare system. One of the missing parts is seamless transmission of holistic medical data from multiple separate EHR medical portals, data that can be easily captured, auto-updated with user notifications, and aggregated from multiple different healthcare sources.
In addition, medical data must be secure and compliant with the Health Insurance Portability and Accountability Act. Data should be seamlessly interoperable with all authorized and authenticated healthcare stakeholders and under the patient’s control, using educational and CDS apps, which are not currently sufficiently available in most EHRs.
Technological advancements notwithstanding, our EHRs still require the retyping of regulations set by the Office of the National Coordinator for Health Information Technology and redictation of preexisting data because interoperability and data sharing capabilities are inadequate. Reusable, interoperable electronic data created by the primary care physician (PCP), a specialist, or even the patient would save oncologists significant time in getting this information into the computer. Seamless electronic access to medical data would improve value-based care so that it reflects the most effective treatment, with the most acceptable toxicities, given at a nearby site without significant delay and at a fair cost. Part of achieving this would involve improved sharing of health data such as labs, vital signs, clinical documents, and medical observations.
As medicine enters the digital health age, there has been an exponential increase in the quantity of meaningful sources and types of medical data for individuals and populations. Health and wellness data available from our smartphones and watches include vital signs with pulse, blood pressure, glucose, and ketones. These devices now provide electrocardiograms and arrhythmia detection, as well as monitoring for emotions, exercise, sleep, and sleep apnea. These highly individualized data from wearable and mobile devices, such as the Apple Watch and the iPhone, are increasingly used to detect acute and chronic toxicity related to cancer and its treatment and can be provided outside the medical setting. These efficient systems can capture, monitor, analyze, and report all findings to patients’ mobile devices and increasingly to our EHRs. These instruments provide volumes of “personomic” detail—different from knowledge of the disease itself—and much of these data will come from different academic centers and laboratories.
Patients with cancer have access to the internet for their health and medical education, but these portals can be confusing. Many who use wearable computing medical devices and medical apps bitterly complain about the inability to easily upload the increasing amount of useful patient-generated health and wellness data to their doctors’ and hospitals’ systems, as well as the inability to easily download their health data generated by the EHRs of their providers and hospitals. The basic reason for these complaints is that although over 90% of patients’ medical data reside in electronic form in hospital and clinic computers today, only 30% to 40% of the data can be easily exchanged with another computer, requiring oncologists to retype, redictate, or scan preexisting data from the PCP, the specialists, and even the patients.
Data that we collect in our EHR can be structured as coded data so that they are both machine and human readable, and by adhering to common data and interoperability standards, we can transmit these data to other computers with complete understandability. The data can also be reused or managed in a readable, unstructured format.
There are 3 industry standards for health data exchange and interoperability that support mainly foundational and structural interoperability (Table
Much needs to be done to improve interoperability of medical data systems. However, standards and new systems are developing at a rapid pace, affording advantages and efficiencies where, previously, enormous impediments stood in the way. As 2019 gets underway, we can now begin to imagine taking full advantage of the maturing of digital health and merging it with standards developed for healthcare data and interoperability.