Improving Health IT Act Potential to Assist ‘Moon shot’

As the US prepares for the upcoming presidential election, Congress will not only break for summer in August but will also have an extended break in October and November. This means there will be fewer working days this year for Congress to draft and pass key healthcare and health IT legislation, such as the 21st Century Cures Act. The House passed the Act back in July 2015. Since, the Senate Health, Education, Labor and Pensions (HELP) Committee has parsed the Act and created several new companion pieces of legislation.

Earlier this year, the Senate HELP Committee passed The Improving Health IT Act legislation, which targets electronic health records (EHRs) and aims to make them more interoperable. It does this by enlisting existing data sharing networks to develop a voluntary model framework and common agreement for the secure exchange of health information across existing networks. This will foster bridging between currently siloed networks. The act also mentions the creation of a digital provider directory that facilitates exchange and allows users to verify validity. Finally, it requires that HHS give deference to standards developed in the private sector.

Deemed too far reaching, the intention of breaking up the 21st Century Cures Act was to split the bill into smaller, more attainable goals. One major problem with the original act was the provisions around data sharing. With this large piece of legislation broken down into smaller pieces, we are starting to see positive changes.

In a recent statement, Senate health committee Chairman Lamar Alexander (R-Tenn.) said, “Because our Innovation—or ‘Cures’—legislation will affect virtually every American, it will be the most important new law enacted this year. It would target rare diseases, including diseases resistant to antibiotics. It would allow NIH to require researchers who use NIH funds to share their data. It would encourage interoperability of electronic medical records, reduction in excessive physician paperwork, clarify each patient’s right to own their own medical record, and discourage information blocking.”

From the start, Alexander discussed supporting mandatory funding by suggesting an “innovations projects fund” for a limited number of high priority projects, such as precision medicine and the cancer “moon shot.”

Since VP Biden’s call to arms and the site CancerMoonshot2020.com was launched, there has been strong and vocal support for new treatment and methods. With this new legislation, we see light being shone in the area of responsible data sharing. Risk-based de-identification has been shown to offer the optimal mix of protecting patient privacy and maximizing data utility. Standards on sharing PHI have been released by HITRUST and the Institute of Medicine, demonstrating that the standards for sharing data in the privacy sector are already being made. These standards emphasize that sensitive data can be shared for research without sacrificing patient privacy.

We see these standards are being applied for oncology research already. ASCO CancerLinQ uses a risk-based methodology to de-identify data for secondary use. With 97% of patient information being locked away in data silos, it was necessary to use a responsible method of de-identification to unlock that data for research purposes. With time, this methodology will become the defacto standard for sharing health data.

With the number of working days for Congress winding down, we may not see the final legislation until the end of the year.

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