Recommendations center on patient matching and data privacy
March 21, 2025 (ACP) -- The American College of Physicians provided input to Congress regarding an update of the 2016 landmark 21st Century Cures Act, which was designed to help accelerate medical research development and bring new innovations to patients faster and more efficiently.
ACP now looks forward to potential action regarding a Cures 2.1 Act, which would build on the Cures 2.0 Act, introduced in Congress in 2021. “Major components of Cures 2.0 became law through the passage of legislation in the last several years, but much remains outstanding,” said Vy Oxman, ACP senior associate for legislative affairs.
ACP played a crucial role in the legislative process in 2024, when Reps. Diana DeGette (D-Colo.) and Dr. Larry Bucshon (R-Ind., now retired) requested information from a broad variety of interested parties on the next steps for the 21st Century Cures Act.
The representatives received more than 300 responses, including a letter from ACP that outlined its priorities in areas such as enhanced pandemic preparedness, strengthened public health infrastructure, improved data interoperability and data privacy.
In December 2024, the representatives finalized a white paper, titled “Next Steps for the Cures 2.0 Act and the 21st Century Cures Initiative,” which included ACP recommendations on patient matching and data privacy.
“ACP urged lawmakers to focus on data exchange and information blocking to advance widespread health care interoperability,” Oxman said. “We also underscored that advances to health care interoperability will not work without Congress taking action on patient matching and patient identification issues in our current health care system. The white paper acknowledges the critical need to enhance health care interoperability and address patient matching issues.”
In regard to data privacy, “ACP underscored the need for data protections for personal health information shared with digital technologies and health care mobile apps, which are not subject to Health Insurance Portability and Accountability Act (HIPAA) privacy protections,” Oxman said. “The white paper acknowledges that ‘the regulation of health-related data is outdated’ and has a spotlight section on the need to address health data privacy concerns with mobile apps and wearable devices that fall outside of the HIPAA-regulated environment.”
Many ACP priorities were included in the white paper. “We consider this progress because provisions for both patient matching and data privacy were not included in Cures 2.0,” Oxman said. “Now, hopefully, they will be considered in the next Cures package thanks to our advocacy and comments.”
Rep. DeGette, the ranking member on the House Energy and Commerce Health Subcommittee, is working on finding a Republican counterpart to continue the work on Cures 2.1 legislation, Oxman said. “Currently, things are at a pause as Congress works on funding and budget bills that will need to get passed this year,” she noted.
On a related front, ACP continues to push for legislation to improve patient matching and transparency. In 2024, ACP supported the Patient Matching and Transparency in Certified Health IT (MATCH IT) Act.
As ACP noted in a letter to congressional representatives, “The U.S. does not have a national strategy on patient identification, and that has contributed to serious patient privacy concerns. Currently, when attempting to achieve accurate patient matching for medical records, our health care system requires patients to repeatedly disclose a significant amount of identifiable information before they can receive medical care.”
ACP highlighted how “MATCH IT would establish standards and protocols, with stakeholder input, to improve positive patient identification and promote interoperability. It would decrease the rate for patient misidentification by establishing a clear, national standard definition for the term ‘patient match rate’ to ensure consistency and clarity in decision-making efforts for patient matching.”
In addition, ACP wrote, the legislation “would standardize patient demographic data within certified health information technology platforms to improve patient matching and would establish an anonymous, voluntary program to measure patient match rates across the country.”
If the MATCH IT Act is not passed on its own, ACP recommended it be included as part of the larger CURES 2.1 package, according to Oxman. “We are part of the Patient ID Now Coalition. The coalition is made up of a broad group of health care stakeholders who want to advocate for a nationwide strategy to address patient identification. As part of this effort, the coalition is very supportive of the MATCH IT Act,” she said.
The MATCH IT legislation was reintroduced in March 2025 by Reps. Bill Foster (D-Ill.) and Mike Kelly (R-Pa.) and is known as H.R. 2002. Moving forward, Oxman said, “the Cures Act and the MATCH IT Act are both bipartisan, and we hope that there will be traction on them in this Congress.”
Back to the March 21, 2025 issue of ACP Advocate