Cancer Researchers Call For EHR StandardsCancer Researchers Call For EHR Standards

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As cancer researchers better understand the "panomics" of cancer--the "combination of genes, proteins, molecular pathways and unique patient characteristics that together drive the disease," electronic health records (EHRs) can play a transformational role in cancer research. So concludes the American Society of Clinical Oncology (ASCO), which calls for EHR vendors to implement standards to facilitate capturing, storing, and sharing this panomics-related data, with the goal of increasing cancer survival.

ASCO's report--Accelerating Progress Against Cancer: ASCO's Blueprint for Transforming Clinical and Translational Cancer Research--summarizes recent breakthroughs in technology and cancer panomics. But the report also asserts that while an unprecedented opportunity exists to make more rapid advances in research for cancer treatments, the nation's research system is "unprepared to deliver on this promise."

"There's a whole new type of information being developed that electronic health records have not been designed to handle," Dr. Peter Yu, director of cancer research at the Palo Alto Medical Foundation, told information Healthcare.

Dr. Yu, who is also a member of ASCO's board of directors, said we've entered an era of personalized medicine where complex molecular information identifies specific cancer-causing mutations that will increasingly characterize each patient. In that world, researchers will find that each cancer likely results from a complex interaction of mutations and molecular pathways and not just one mutation. These mutations affect a variety of processes such as how a drug is handled, how it's metabolized, how it's activated, whether there is drug resistance, and how the tumor cell responds to treatment.

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Unfortunately, EHRs currently on the market neither adequately capture panomics data, such as the molecular level analysis of the DNA, nor do they help researchers access information to better fight cancer--a disease that kills more than 500,000 people in the United States each year.

"Certain information may be in the system, but not in a way that anybody can easily find it. For example, did the patient get better? Did the patient have a response? What side effects has the patient had?" Yu said. "This is very difficult information to extract because it's placed, if at all, in free text which is a subjective way of describing something and hard to find."

Further integration between electronic systems that store clinical information and research data can enhance research efforts and allow cancer investigators, physicians, and other clinicians to learn in real-time the best approach to treatment and how best to take advantage of the next clinical development.

"ASCO's blueprint envisions how the research system and clinical environment could be better integrated and makes initial recommendations for the pathway of how to achieve that vision. At the end of the day, it's about how we can improve the process and speed delivery of promising new treatments for cancer patients," Yu said.

In order to harness advances in health IT that will integrate clinical research and patient care, the report said a number of measures must be taken, including the following.

-- Health IT vendors must improve the design of their products, including EHRs, which can unlock a wealth of real-world patient information that is now kept in file cabinets and unconnected computer systems.

-- Oncology EHRs should be standardized to include relevant clinical and research data elements. These data elements, which include information such as cancer's molecular characteristics and the patient's prior treatments and demographic information, must be displayed in a consistent format.

-- Industry standards are needed for working with, storing, and capturing information from tissue and blood samples, which are essential to identifying and evaluating new therapeutic targets.

-- Health IT advances must protect patients and researchers by examining the need for revised standards for patient privacy, information sharing, and intellectual property protections.

"With the recent explosion in our scientific knowledge about cancer, we can finally begin to solve some of the toughest challenges in cancer care," Dr. Michael Link, ASCO's president, said in a statement. "We could begin to see major progress in treating even the most difficult cancers--but the speed with which we do this is dependent on modernizing the nation's cancer research system for the molecular era."

Currently, ASCO works with health IT vendors and other partners to develop a rapid learning system for cancer care. ASCO officials said such a system will harness cutting-edge IT to connect cancer patients and their healthcare providers to a central knowledge base; collect and sort information from millions of physician and patient experiences in a secure environment; and provide a high-quality dataset for researchers to track the real-world outcomes of cancer therapy and identify new ideas for research.

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