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Industry Groups Respond to Patient-Centered EHR Legislation

The National Partnership for Women & Families, and its partners, say the Senate HELP legislation for patient-centered EHR use might not go far enough.

By Sara Heath

The Senate Health, Education, Labor, and Pensions (HELP) committee’s draft legislation for patient-centered EHR use doesn’t go far enough to advocate for patient data access, according to the National Partnership for Women & Families and representatives from its national campaign, Get My Health Data.

In response to the HELP committee’s publication of the draft legislation as well as its call for industry feedback, both the National Partnership and the Get My Health Data Campaign sent similar comment letters to the senate committee, explaining that the legislation should to more to protect patient access to information.

Both letters comment the HELP committee’s acknowledgement of the healthcare industry’s need for this kind of legislation. The Get My Health Data Campaign’s letter agrees that patient access to health data is vital in creating a better care environment.

“We commend the overall acknowledgement reflected in the draft legislation that patient access is an essential part of improving health IT for providers and for patients,” the letter begins. “We are particularly supportive of the call for patient access to longitudinal data that is easy to understand, secure and updated automatically. It is essential to move away from the era of “records requests” toward the day when all patients have automatic, easy access to their up-to-date health data whenever and wherever they need it.”

However, representatives from the campaign say that the legislation might not go far enough in advocating for the patient.

Throughout much of the letter, the Get My Health Data Campaign suggests adding in language that would further include the patient in on some of the benefits of the bill. With regard to data blocking, for example, the campaign says that the legislation should include language regarding data blocking used against a patient trying to access her health information.

The campaign also illustrates a few additional areas where the HELP committee could help patients with their EHR use.

First, the legislation should eliminate fees for patient access to health data, citing fees as a major barrier to patients successfully engaging with their health information.

Next, EHRs should have capabilities to easily upload patient data. This would get rid of any barriers to integrating patient-generated health data.

Finally, the legislation should facilitate a privacy framework, primarily to protect the apps consumers use to engage with the data and store the data.

The National Partnership for Women & Families’ letter iterated much of the same.

In addition to providing comments on how the HELP legislation can be made even more patient-centric, the National Partnership commended the Senate committee for focusing on patient access to health information. This kind of access will be a major driver in improving healthcare, the National Partnership maintained.

“Patients cannot possibly be active partners in care, effectively set or achieve health goals and treatment plans, or make informed decisions about high-value providers without accessible, electronic information about their health and health care,” wrote the National Partnership’s director of health IT policy and programs Mark Savage.

Specifically, Savage touched on the repeated use of the word “burden” in the legislation. Patient access to health information is a right of the patient, Savage said, and should not be characterized as a burden on the provider.

[T]he emphasis on provider burden in providing patients access to their health information (apparent in Sections 2 and 7) does not adequately weigh the longstanding and prevalent burden on patients to access and use copies of their own health information. Moreover, the resulting dissonance in the draft—using a variety of mechanisms to promote patients’ access while simultaneously characterizing it as a burden on providers—is confusing and could estrange the consumer community.

Instead, Savage says the Senate committee should redefine the term, and reconsider the burden both parties face in accessing health data.

In general, Savage and the National Partnership assert that the legislation needs to reconsider the perspective of the patient, and put a better emphasis on the sharing of information.

“As a whole, the culture of health care continues to be more about guarding data than sharing it,” Savage concluded. “In our comments, we offer suggestions to address these and other barriers to patient access to electronic health information, including eliminating fees and enhancing provider education.”

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