U.S. Plans to Alter Researcher Access to Health Data Spark Concerns

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Patrick Wang

Expert of Peptides | Ask me anything about Peptides | Sales Manager at AHB Lab

Table of Contents

Proposed Changes to Medicare and Medicaid Data Access

Health researchers are currently contesting a plan by the U.S. government that could dramatically alter how they access a vast array of health data from federal programs like Medicare and Medicaid, which collectively support the medical needs of approximately 140 million people. With a looming deadline of May 15 for public comments, the academic community is voicing serious concerns about the implications of these proposed changes by the Centers for Medicare and Medicaid Services (CMS).


Rise in Costs and Shift to In-House System

Historically, CMS has allowed research institutions to acquire and store de-identified medical claims data for a one-time fee and additional smaller fees for subsequent uses. This data has enabled researchers to conduct various studies that have influenced health policy and outcomes. However, under the new proposal, CMS plans to discontinue its practice of distributing data via encrypted thumb drives and instead, require researchers to use its Virtual Research Data Center (VRDC) at a significantly higher cost. The initial fee for accessing the VRDC is set at $15,000 with an annual continuation cost of $10,000, in addition to a $20,000 per user “seat fee” for the first year.



Concerns Over Impact on Independent Research

The shift to the VRDC not only raises financial barriers but also threatens the independence of health research. Critics argue that the increased costs and the need to use a government-run system could hinder the development of health policies and potentially deteriorate health outcomes. William Schpero, a health economist and co-author of a critical commentary published in JAMA, emphasizes the broader implications beyond just the financial aspects.


The Debate Over Data Security and Transparency

CMS defends the changes as necessary for enhancing data security amidst growing cyber threats and claims that the VRDC offers a more timely and cost-effective way to access data. However, opponents like Rachel Werner from the University of Pennsylvania worry about the decrease in transparency in healthcare data, which is vital for public insight into significant healthcare programs. Additionally, the economic motives behind the restructuring are scrutinized, with some suggesting that it primarily serves to balance CMS’s financial books.


Academic and Economic Repercussions

The proposed changes have sparked a debate about the accessibility of data for academic research, particularly affecting younger researchers and smaller institutions. Becky Staiger of the University of California Berkeley School of Public Health points out that the VRDC could democratize data access by eliminating the need for expensive internal data storage systems. However, the high fees could disproportionately impact less-funded researchers.


Future of the Proposal

While CMS has extended the deadline for public feedback and delayed implementing the changes until at least 2025, the decision has already triggered a significant response from the academic community. The agency acknowledges the importance of considering public concerns and appears responsive to the feedback, suggesting that the final decision may still be influenced by the ongoing discussions.

As this issue develops, the research community continues to push for a reconsideration of the proposal, emphasizing the need for a balanced approach that secures data without compromising the quality and independence of health research.

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