- An evolving health IT platform that leverages big data analytics to help oncologists deliver higher quality care to cancer patients will need to skirt current barriers in EHR interoperability. The American Society of Clinical Oncology (ASCO) updated progress on its CancerLinQ platform at a Capitol Hill briefing on Sept. 15, during which advocates of the effort called on Congress to advance widespread interoperability of EHR systems and prevent the practice of information blocking.
When fully realized, CancerLinQ will provide real-time feedback to oncologists by comparing the care they’re giving against evidence-based guidelines and quality metrics, “making state-of-the-art practice accessible to everybody in any community and every setting — even those that are under-resourced and geographically distant from major [cancer] centers,” said Clifford Hudis, MD, a practicing oncologist and chair-elect of ASCO’s Government Relations Committee.
Fifteen “vanguard” oncology practices representing about 500,000 patients have enrolled in CancerLinQ so far. The platform will be fully rolled out in 2016, with a goal that any oncology practice in the United States and beyond eventually will be able to participate, according to Hudis.
Robin Zon, MD, who works at one of the vanguard practices, Michiana Hematology Oncology in South Bend, Ind., explained that she can enter patient characteristics into one of CancerLinQ’s portals, query it to mine de-identified data, and then zero-in on trends that she can translate and apply to the care of her patients.
“CancerLinQ helps realize the promise of health information technology; it actually pulls data out of the existing EHR system that I have in my own practice,” said Zon. However, “what has happened is that EHR systems don’t communicate with each other. Vanguard practices are having to dedicate time and resources, including my entire IT department, to be able to adapt the technology in order to implement CancerLinQ,” she added.
In some cases, commercial EHR systems require a transaction fee to import or export information. “Other EHR vendors are flat-out refusing or making it prohibitively expensive to make the systems communicate with each other,” said Zon. “The bottom line is, if data sharing is not achievable, then vital insights and the help our patients need will be lost. I believe our patients deserve better.”
Jack Whelan, a volunteer patient advocate and survivor of a rare form of blood cancer, noted that big data’s potential for insights about cancer care remains untapped and unavailable to patients, physicians and researchers. “Up until now, we haven’t used the available technology to share and interoperate that data,” he said. “The vast amount of information and data that can help me and millions of other cancer patients has been locked away in systems that can’t or won’t communicate.”
Hudis said CancerLinQ would break that pattern by providing personalized and unbiased decision support for every patient under every circumstance. “It will draw on all of the patient and practice data that we can get — not limited to demographics, clinic notes, procedure notes, physical examination results, allergies and on and on. Anything that is in the electronic record is fuel for CancerLinQ,” he stated.
Yet, ASCO maintains that achieving widespread interoperability is a threshold requirement to full utilization of CancerLinQ. The group issued the following recommendations to help eliminate information blocking as a barrier to interoperability:
Urge Congress to accelerate adoption of interoperability standards. “The provisions on interoperability and information blocking contained within the 21st Century Cures legislation passed by the House of Representatives (H.R. 6) on July 10, 2015 provide a strong baseline for such legislation,” according to an ASCO position paper.
Congress should establish and enforce clear rules that prohibit information blocking. “ACSO supports the information blocking provisions that have been placed in H.R. 6. Again, we urge the Senate to adopt this same language,” said Hudis.
Federal officials should educate providers and vendors regarding contractual provisions and activities counterproductive to achieving interoperability. “No additional financial burden should be placed on providers, many of whom have already spent tens of thousands of dollars to purchase systems that they were promised would be interoperable, only to find out later that they are not or have become non-interoperable,” Hudis added. “The 21st Century Cures bill allows a transition period during which providers whose EHRs are decertified because they lack interoperability should be strengthened to prevent providers from having additional expenditures as they acquire additional resources in the form of new certified EHRs. This same language needs to go into the Senate proposal as well.”
Congress should ensure coordination among federal agencies and the guidance that flows from enforcement efforts. “This is an opportunity to streamline, to make things simpler, to make things consistent,” said Hudis. “We’re asking everybody to think hard about how to make that possible so we don’t perpetuate the current system.”