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Why Do We Need to Use It?

The management of healthcare data for patients is extraordinarily complex. Some standards exist for clinical content but, until very recently, most of them have been disconnected from standards for the interoperable processing of clinical data.

Unstructured data refers to information that is not organized in a pre-defined manner. It is typically text-heavy, and may contain information such as dates, numbers, and facts. The widespread use of unstructured data in electronic health records (EHR) – from free-form narrative text such as handwritten patient charts to emails containing pathology reports – is the single greatest impediment to meaningful data exchange to improve cancer diagnosis and treatment.

Even the development of a platform for advancing interoperability and the sharing of vital information is inhibited by the lack of progress toward utilizing sophisticated computers, specialized apps, and other state-of-the-art tools that are either available, or that we already have but don’t use to their potential.

This reality is unfortunate for many reasons, most importantly because it prevents medical professionals from routinely obtaining and providing information that could lead to better outcomes for cancer patients. At the same time, it undermines the ability to bring “nontraditional” participants into the healthcare system, again, with the goal of improving outcomes.

State and national cancer registry programs are clear examples. They have not been historically viewed as part of the healthcare continuum, but they can play a central role within a genuinely effective data-exchange platform for cancer diagnosis and treatment, sitting atop a strong foundation of interoperable information. But developing such a platform – with its data warehouses, analytics and decision-support tools – requires structured data.

In other words, the wide variety of unstructured data currently in broad use impedes our ability to get the best-possible information to improve patient care and outcomes, decrease adverse events and medical costs, and develop better treatments. Unstructured data also minimizes our ability to aggregate, parse, analyze, and consolidate information from disparate medical and ancillary sources so that concise, complete patient summaries and care plans can be generated and shared across multiple channels.

The California Cancer Registry (CCR) is committed to establishing a genuinely effective, interoperable (cancer data-exchange platform) that utilizes standardized, structured data. CCR’s goals include enabling EHR systems to utilize this data and supporting further interoperability beyond cancer. The use of structured data will enable the development of data warehouses, analytics, and decision-support tools, thereby advancing healthcare’s overall ability to improve patient care and outcomes, decrease adverse events and medical costs, and develop better treatments.

Laborious Assessments to 21st Century Analytics

Today, pathology reports are generally semi-narrative or semi-structured, and the language used is the “dialect” of the local community in which the pathologist works. One unfortunate consequence is that assessments can be based on incomplete information, and too often are painstaking and protracted. The time has come to employ modern computer technologies, combined with greater information about cancer, to create a paradigm of timely use of not only population-based data, but also of treatment data. You can help CDMC achieve this aim – and move us into the future.

Missed Opportunities to Better Outcomes

We are committed to changing this alarming reality: CCR currently receives initial cancer abstracts from reporting facilities at least 15 months after the first diagnosis, on average, as is common nationwide. As a result, operational efficiency is severely impaired, other data on the same patient often cannot be found, and scarce resources are diverted away from the development of more-advanced approaches to informatics and surveillance linked to cancer care. You can help CDMC seize opportunities rather than miss them – and, ultimately, the beneficiaries will be cancer patients!