Senate HELP Draft Bill Affirms Need for Greater Access to Health Data

The Senate Health, Education, Labor & Pensions Committee (HELP) committee has introduced bipartisan draft legislation designed to reduce healthcare costs. The bill, titled “Lower Health Care Costs Act of 2019,” has health IT provisions included in it that align with the federal government’s aim to improve patients’ access to data and interoperability. 

Broadly, the legislation—created by Senate HELP Chairman Lamar Alexander (R-Tenn.) and Ranking Member Patty Murray (D-Wash.)—tackles key healthcare issues such as surprise medical billing, drug prices, and maternal mortality, but in the fifth section of the bill—improving the exchange of health information—health IT makes a few appearances.

A one-page summary of Title V of the bill, for instance, states that getting access to one’s medical records should be as easy as booking an airline ticket. Section 501 of the draft legislation expands on the Center for Medicare & Medicaid Services’ (CMS) Blue Button Initiative by requiring commercial health insurers to make information available to patients through application programming interfaces (APIs), including: health insurance claims data, in-network practitioners, and  expected out-of-pocket costs. “This ensures that patients have full, electronic access to their own health information and information on what the patient would pay out-of-pocket for specific care,” the bill states.

This specific is provision is quite aligned with two recently proposed interoperability rules issued by CMS and the Office of the National Coordinator for Health IT (ONC), which call for health IT developers to publish APIs and allow health information from such technology to be accessed, exchanged, and used without special eff­ort. The CMS rule, in particular, proposed that government-based healthcare insurers must implement, test, and monitor an openly-published FHIR-based API to make patient claims and other health information available to patients through third-party applications and developers.

Now, this legislation calls for commercial payers to follow suit, something that CMS Administrator Seema Verma expressed great desire for when she spoke at the HIMSS19 conference earlier this year, shortly after the two proposed rules were released. Verma said back in February, “[CMS] led the market with Blue Button 2.0 and with that we unleased all our claims data for Medicare patients…We are requiring that other insurers follow our lead.”

To this point, another section of the bill, under the transparency portion of it, requires health plans to have up-to-date directories of their in-network providers, which shall be available to patients online, or within 24 hours of an inquiry.

What’s more, related to privacy and security, the legislation emphasizes that all existing privacy and security protections for patient health data under the Health Insurance Portability and Accountability Act (HIPAA) and state laws apply, while incentivizing healthcare entities to adopt strong cybersecurity practices by encouraging the Secretary of Health and Human Services (HHS) to consider entities’ adoption of recognized cybersecurity practices when conducting audits or administering fines related to the HIPAA Security Rule.

The bill also requests a Government Accountability Office (GAO) study to better understand existing gaps in privacy and security protections for health information as patients move their information to third parties, such as mobile applications, that are not covered by HIPAA privacy and security rules. The study would identify potential opportunities for improving the privacy and security protections for that health information.

This particular issue was a key point of discussion in recent Senate HELP hearings, as certain smartphone apps created by third-party developers and not by providers or business associates covered under the HIPAA are not subject to HIPAA rules, even if a breach occurs.

The legislation has so far been received with praise by healthcare IT groups and associations, including the Health Innovation Alliance (formerly Health IT Now), whose executive director Joel White said in a statement that “Chairman Alexander and Ranking Member Murray are absolutely right: it should be as easy to obtain your personal medical records as it is to book a plane ticket. This draft legislation takes meaningful strides to ensure that is the case.”

Meanwhile, the AMGA said in a statement that “Access to claims data from all payers has been a longstanding priority for AMGA and its members…Successfully delivering care and assuming financial risk for a patient population requires a detailed understanding of all the care a patient receives.” Jerry Penso, M.D., AMGA president and CEO, added, “Moving through the healthcare system can be daunting for patients. Our members can guide them, but it’s difficult to do so without a complete understanding of all the care they have received. I’m encouraged this draft legislation offers our members a tool they have been asking for to help provide the best possible care to the communities they serve.”

Senate HELP Chairman Alexander said in his statement, regarding the legislation at whole, “There's one issue I hear a lot about from Tennesseans, and it is, ‘What are you going to do about the healthcare costs I pay for out of my own pocket?’ Well, we've got an answer,” he attested. “Republicans and Democrats in the United States Senate have announced this proposal of nearly three dozen specific bipartisan provisions that will reduce the cost of what Americans pay for healthcare. These are common sense steps we can take, and every single one of them has the objective of reducing the healthcare costs that you pay for out of your own pocket. We hope to move it through the health committee in June, put it on the Senate floor in July and make it law.”

The Senate health committee is requesting comments on the discussion draft. Comments must be submitted to [email protected]  by 5 PM on Wednesday, June 5, to be considered.