GA landmark study from more than a decade ago found that nearly one-fifth of people on Medicare are readmitted to the hospital within 30 days of being discharged, harming patients and increasing costs. It was shown that
This research brought about major changes in medical care. The government has begun to closely monitor readmission rates and impose fines on hospitals with high readmission rates. The hospital has adopted new procedures aimed at ensuring patients are discharged safely. Currently, the patient's condition after discharge is good. The study would not have been possible if the investigators did not have access to Medicare data.
Fast forward to this month, and such studies using Medicare data are suddenly in jeopardy. On February 12th, in the name of data security, the government, without sufficient warning, restricted access to this data and made tens of thousands of new payments to individual researchers seeking to improve the nation's most important health insurance system. It announced that it would impose a fee of USD. We plan and care for millions of individuals.
Maintaining the highest standards of data security is paramount. But you don't have to sacrifice research access and productivity in the name of data security. The use of data should not strain the budgets of even the most well-funded institutions. We must not exclude companies with fewer resources or exacerbate inequities in an already two-tiered system.
The new rules make just two changes, but their overlap raises major concerns. First, starting in August, new projects will only be able to access their data through CMS's cloud environment, rather than the current practice of storing data on the institute's highly secure computing infrastructure. In principle, this is not such a bad thing. In practice, the costs associated with each “seat” at the virtual table significantly limit the number of researchers who can use the data. My current research team is 4 people, but he has to reduce it to 1 person, excluding students, postdocs, and junior colleagues. Second, CMS is imposing new fees to continue using data stored outside the cloud. He will be charged a fee of $20,000 if he starts a new project (until August) and a fee of $10,000 per year if he continues an existing project.
A $20,000 fee for a new project is difficult for anyone to afford, but especially students and people early in their careers who believe their futures could be harmed as a result of these rules. Masu. In August, prices will be even higher.
The Centers for Medicare and Medicaid Services is proposing changes as necessary, citing “increasing data security concerns and an increase in data breaches across the healthcare ecosystem.” While it's natural for CMS to have such concerns, current solutions can exacerbate other problems.
To give you an example of the cost of this new rule, I am a physician, health economist, and researcher at the Leonard Davis Institute for Health Economics at the University of Pennsylvania. Think of it as a focus. To continue current projects, the cost of storing and accessing data can range from less than $20,000 per year to between $80,000 and $200,000 per year, depending on how many people on the team can continue research. . These new fees are expected to be collected as early as August 19th. I am fortunate enough to be well-funded, but my grant does not include such amounts.
More worryingly, these rules limit the questions we can answer, change the colleagues we can work with, and limit the training of junior researchers. Some of the most impactful research I've done answers questions that arise after reading a newspaper article or hearing about a new policy being considered. Rapid access to data has made it possible to get answers to these questions, but that rapid access is at risk.
My best research has been done in teams, incorporates diverse perspectives, challenges the way we think about problems, and requires us to find creative solutions. New data access rules significantly limit the number of people who can access your data and participate in your projects.
The burden of the new rules will be even greater for students and young researchers, especially at universities with fewer resources. Once these rules are in place, juniors who previously had access to Medicare data at low cost will have to scramble to earn degrees and start their careers.
Restricting access to these data is not just an academic issue. This affects not only those enrolled in Medicare and Medicaid, but also the taxpayers who fund these programs.
These rich data streams allow us to understand what's going on in our huge and expensive health care programs. These can help identify troubling issues in care and document costly overruns. They help us act like a government research and development arm and deliver results that drive improvements in our chaotic health care system.
Will such research be conducted in the future? There may be some. But given the high fees being proposed, it probably won't be that much.
Well-resourced institutions and established researchers will likely find a way through this maze. However, the scope of the investigation will be reduced. New or less well-known issues may be ignored. People with complex health needs may receive less attention.
Is that really the system we want? Certainly not. Hundreds of researchers signed a letter asking CMS to reconsider the changes. Although CMS is seeking comment, its guidance is information on how to implement these changes, not how to best enhance data security while maintaining appropriate access.
Pricing and access policies should at least maintain the status quo of research and preferably enhance access to promote equity and innovation. This advances his CMS strategic pillars of promoting equity, driving innovation and engaging partners. I urge CMS to work with the academic community to provide researchers with a plan to improve data security while preserving the data access we have all come to rely on to advance science. I implore you to give us time and develop new rules that can be implemented over a longer period of time. Improve the health of our people. Don't rush to data security and kill innovation.
Rachel M. Warner is Leonard Davis Institute for Health Economics Professor of Medicine and Health Economics at the University of Pennsylvania.
