ONC Report Details Roadblocks to Sharing Patient Data

May 18, 2015 11:57 am Michael Laff Washington, D.C. –

Primary care physicians often discover that the simple task of sharing patient information with a subspecialist or a hospital comes with a price tag.

[Doctor working on laptop]

Retrieving or sending patient information or linking up with a laboratory may mean being charged an extra fee, and the maze of different technology systems, as well as restrictive business practices, create obstacles to facilitating patient care. But as physicians transition to electronic health records (EHRs) and adopt standards for meaningful use of that technology, a key goal of health policymakers is to facilitate patient care with a smooth transfer of information, an effort the AAFP has long promoted.

A report that HHS' Office of the National Coordinator for Health IT (ONC) submitted to Congress last month highlights many of the problems physicians encounter with their technology systems. The 39-page "Report on Health Information Blocking"(healthit.gov) is largely based on anecdotal evidence, but it does highlight business practices that may be hindering exchange of information.

Most of the concerns were directed at health IT developers, although medical facilities also were cited as part of the problem -- specifically, the control exerted by major health institutions over patient records. Larger hospital systems tend to have a greater potential for information exchange, but some institutions may be using their size as leverage to withhold patient information. Some hospitals will not cooperate with institutions outside their market or network as a way to control referrals, according to the report.

Story highlights
  • When physicians seek to exchange information about patients, the maze of different electronic health record (EHR) systems and restrictive business practices create obstacles to facilitating patient care.
  • A recent government report cites a lack of transparency in health IT that allows companies to introduce unnecessary surcharges or noncooperative practices, but it says evidence of deliberate information-blocking is limited.
  • Costs associated with training staff and implementing new technology often discourage physicians from switching to a new EHR platform even when they are dissatisfied with their current service, a problem that the AAFP has raised previously.

The ONC report does not name specific vendors or institutions, and it does not cite any cases of deliberate information-blocking.

The authors acknowledge that data are insufficient to pinpoint the extent of information-blocking. During 2014, HHS received 60 reports about behavior that created obstacles to sharing information, according to the report.

"Many of these complaints allege that developers charge fees that make it cost-prohibitive for most customers to send, receive or export electronic health information stored in EHRs, or to establish interfaces that enable such information to be exchanged with other providers, persons or entities," the report states.

And, in fact, the report adds, "There are indications that at least some developers may be engaging in opportunistic pricing practices or charging prices that are designed to deter connectivity or exchange with competing technologies or services."

Some vendors charge for connecting to a local lab or a hospital, for example, which conflicts with the goal of open communication. In other cases, users are charged for extracting their own data from an EHR, such as when they want to move to another technology platform.

According to AAFP President Robert Wergin, M.D., of Milford, Neb., once physicians sign a contract with an IT company, they often become hostage to a single vendor. Costs associated with training staff and implementing new technology often discourage physicians from switching to a new platform even when they are dissatisfied with their current service.

"Once you're in with one system and get all the training, if you want to go to a different system, there is no easy way to transfer the data," Wergin told AAFP News. "And if you buy a new system, you have to start over."

The report also notes a wide difference among physicians in terms of their ability to exchange clinical summaries. This is a major concern of primary care physicians, who often receive hospital discharge reports that do not explain why a patient went to the ER. Instead, patient records are often a 50-page "data dump" of minutiae, including what kind of juice the patient drank at the hospital, according to Wergin.

"I need information that can help me take care of that patient and exchange information in a seamless way," Wergin said. "All companies should do that as baseline built-in cost, but they say that they can't do it."

Acquiring a system that is suitable for a practice usually entails a substantial cost. Wergin said when he asked an IT vendor to design an EHR system that would be appropriate for his rural practice, the vendor's response was not encouraging.

"Extracting the data that you entered to help you in caring for your community can come at a cost," Wergin said. "The vendor will say either 'We can't do that' or 'We can do that at a substantial cost to your practice.' They often will sell that ability to other practices. It points to the question, 'Who owns the data once it is entered?' I believe it is the patient."

A lot of justifications are cited as reasons not to share health information, some bordering on the absurd and some demonstrating a lack of knowledge about health laws.

"Providers may cite the (Health Insurance Portability and Accountability Act) privacy rule as a reason for denying the exchange of electronic protected health information for treatment purposes, when the rule specifically permits such disclosures," the report states.

Even with limited evidence that IT companies are deliberately blocking information, the fact remains that with no minimum standards for interoperability, IT companies can set the rules.

In response, ONC intends to specify(www.healthit.gov) a coordinated governance framework and process for nationwide health IT interoperability that would require health IT companies to abide by basic standards of transparency that would include some "common rules of the road." The first of these principles would require companies to share health information without adopting any corporate policy that creates a barrier to information exchange. A second principle would discourage IT companies from charging additional fees for sharing information with competitors. The changes are intended to compel IT companies to change their strategy.

"Instead of marketing their product as the largest or the best, IT companies would be competing for customers by offering the kind of service that would improve patient care," Wergin said.

Related AAFP News Coverage
Congressional Testimony
AAFP President Tells Senators How EHRs Help, Hurt Physicians


ONC Maps Out Plan to Improve Nation's Health IT
AAFP Applauds Focus on Interoperability


Q&A With Steven Waldren, M.D.
Quest for EHR Usability, Interoperability Fuels AAFP's Technology Team


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