Information Blocking Undermining ASCO's CancerLinQ Initiative

Pam Harrison

September 17, 2015

CancerLinQ, the ambitious data-sharing initiative announced by the American Society of Clinical Oncology (ASCO) in 2013 to improve the quality of cancer care to all patients in the United States, is on the verge of being undermined as barriers to sharing information continue to block the ability of oncologists to mine data contained in different electronic health records (EHR) across the country, ASCO members are reporting.

"If data sharing is not achievable, then vital insights and the help our patients need will be lost," said Robin Zon, MD, vice president and a senior partner at Michiana Hematology Oncology, PC, in Indiana, during an ASCO news conference.

"I believe our patients deserve better," she added.

Dr Zon's oncology practice was among the first to sign up for CancerLinQ in the United States.

As Dr Zon pointed out, the care of cancer patients is complicated.

Not only is the oncologist involved in taking care of patients, but patients often have comorbid conditions in addition to their cancer, "and it's important that we be able to work with their other providers, including the patient's primary care physician and any other specialty doctors they need to deliver that care," Dr Zon noted.

However, if patients are to receive comprehensive care, "it is essential that I know all the information about that patient and that I be able to access it quickly through the EHR system," she added.

It's here where the EHR systems are failing physicians, ASCO members agree.

ASCO members who are already participating in CancerLinQ are encountering a number of barriers to the free exchange of information between EHR systems — so-called interoperability — arising from the purposeful blocking of information by EHR companies who clearly do not want share their information with other systems.

Among the information-blocking strategies used by EHR companies are attempts to charge transaction fees for each import or export of information to a different platform for electronic health information.

"Even small fees charged per transaction can result in unreasonable aggregate fees on an annual basis," according to an ASCO statement. "And these fees can have a chilling effect on the ability of oncology providers to successful achieve interoperability."

In addition, some EHR companies are refusing to establish connections to permit information exchange with systems developed by competitors, or are charging unreasonably high fees to establish such connections, making data exchange channels extremely burdensome and expensive to develop, ASCO pointed out.

Others are establishing technologic limits on the amount of historic health information that can be exported to a recipient on a different EHR platform.

Still others have developed propriety standards for communicating clinical information documents that are inconsistent with established industry standards.

"This means that often a customized translation feature is necessary to effectively communicate and exchange clinical information between different electronic health records systems," ASCO observes.

And some EHR companies are demanding that healthcare providers contractually agree to give the EHR company an exclusive license to use the healthcare providers' data, effectively prohibiting healthcare providers from making clinical data available for use by others.

"These barriers not only impose unreasonable financial and administrative burdens on oncology practices...they also interfere with 'big data' solutions to provide rapid learning strategies like ASCO's CancerLinQ," the organization contends.

Given that the goal of CancerLinQ is to distil massive volumes of clinical data from large groups of cancer patients into information that can improve clinical decision-making, achieving widespread interoperability between EHR systems, is a fundamental requirement for the establishment and operation of CancerLinQ, it adds.

Rebuffing Industry

In an attempt to deter industry from blocking information sharing between EHR systems, ASCO has urged Congress to enact legislation as quickly as possible to ensure that widespread interoperability is achieved.

"The goal of achieving widespread interoperability has languished for more than a decade despite the massive investment made by Congress in subsidizing health information systems," ASCO points out. "Congress should ensure that aggressive deadlines for implementation are included in legislation on interoperability and information blocking."

ASCO is also urging Congress to pass legislation to remove barriers to interoperability, especially information blocking.

The organization is calling on policymakers to take steps to ensure that patients and oncology providers are not saddled with excessive costs related to achieving interoperability, noting that no group should be forced to subsidize EHR companies who persist in unjustified information blocking.

At the same time, ASCO is calling on federal officials and other stakeholders to ensure that healthcare providers have the necessary information they need to be prudent purchasers and users of health information technology systems.

"CancerLinQ is a powerful tool that will be able to unlock data from patients with cancer and improve care for all patients," Dr Zon emphasized. "But we will never be able to realize the full comprehensive promise of health technology if we don't achieve interoperability."

Only about 3% of adults in the United States take part in any large-scale clinical trial from which oncologists base many of their clinical decisions. This means that 97% of information on cancer patients from which clinical insights might be drawn is languishing uncollected in EHRs and servers across the nation.

"ASCO's CancerLinQ is one of the big data projects that will help to expand the small pool of patients who participate in clinical trials into a sea of real-world patients that could unlock untold mysteries surrounding the development and treatment of cancer," ASCO President Julie Vose, MD, president, enthuses in a web-based opinion piece.

"With this wealth of new information at doctors' fingertips, it will be easier to identify patterns in patient outcomes and examine factors that impact the quality of care of each cancer patient," she wrote.

Can Big Data Really Deliver?

Still, a fair number of skeptics are doubtful that big data can ever deliver the promise of widespread quality cancer care.

The main problem oncologists seem to have with big data right now is that, so far, there is no working product, as reported by Medscape Medical News.

There has been a lot of hype about how EHRs would cut costs and improve efficiencies, and many clinicians are cynical about those claims, said Robert Miller, MD, oncology medical information officer at the Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University, Bethesda, Maryland.

He concurs that for big data to work, big data and EHRs must go hand in hand, but the fact that big data has to be embedded in EHRs is a "tall order."

"And skepticism will persist until such products work," Dr Miller argued.

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