As the Trump Administration and States Push Health Data Sharing, Familiar Challenges Surface
The Northeast Valley Health Corp. In the County of Los Angeles could be a poster child with the advantages of sharing health data electronically.
Thanks to a data network connecting its system of files to other suppliers, the health center receives not only the results of X -ray and laboratory, but also real -time alerts when hospitals on the network admit or unload its patients who suffer from diabetes or asthma, allowing teams to help out and overturn emergency visits.
But Christine Park, the Chief Community Health Center, said that even with these achievements, the sharing of data is far from being transparent: hospitals visited by patients in the center are not all on the same network, and it is often necessary to exchange files via fax.
“You know that the patient went there, and you know that there must be a note,” said Park, “but you continue to run up on this glass door.”
Despite billions of dollars in taxes and two decades of efforts invested in improving the sharing of health care data, according to health defenders, American medical records often remain compartmentalized, which leads to double tests, increased costs and time lost to patients and care teams. And as the Trump administration and the legislators of several states aim to strengthen the sharing of health data, they are faced with financial and operational obstacles that have thwarted previous efforts.
To complicate these efforts, it is a question of knowing whether providers and other stakeholders – faced with the prospect of a reduction in Medicaid revenues after the adoption of the main tax on taxes of President Donald Trump this summer – will invest the time and money necessary to improve data sharing. And in some states, the legislators and defenders of privacy have increased concerns about the sharing of information due to the cases where patient data was used by immigration and law enforcement organizations.
In July, the Trump administration launched a voluntary and technology initiative aimed at modernizing health data sharing and giving patients better access to their information. The Centers for Medicare & Medicaid Services have announced that more than 60 technology and health care companies were committed to “killing the clipboard”. Health data networks and digital health file systems have agreed to follow the rules for sharing current information, suppliers have undertaken to share data via these networks and technological companies have agreed to allow patients to withdraw their data from these networks or applications.
Some leaders in the health technology industry have applauded access to patients, while skeptics have wondered if the voluntary plan would sufficiently motivate health care providers to participate.
“There is not really a carrot here,” said the venture capital Bob Kocher, who was a health official in the Obama administration.
Previous initiatives have encountered the dark economy of data sharing for suppliers: it requires investments and includes risks given the problems of confidentiality and security, and financial performance is often limited.
Most providers are paid mainly for the volume of services they render, which limits the incentive to share data and reduce unnecessary care, despite years of federal and state efforts to progress to a system that financially rewards suppliers for the improvement of health results. And health systems, Kocher said, can lose patients because of commercial competitors when they share data.
In a press release, Amy Gleason, a strategic advisor of the CMS, acknowledged that the sharing of data requires investments and that “certain providers are faced with financial pressures”. She added that CMS uses all the levers available to encourage health care providers to share data, in particular by testing new payment models. New federal initiatives also aim to apply regulations requiring rapid sharing of files and improving data sharing in rural areas.
The federal government has long tried to rationalize the sharing of health files. After the adoption of the 2009 law on information technology on health information for the economic and clinical health law – or the Heech law – during the Obama administration, federal subsidies were used successfully to push most hospitals and doctors to adopt electronic health files and to ensure that most states establish or allow a type of data network.
Subsequent administrations have worked to make these systems more interoperable. The first Trump administration forced providers to quickly share electronic files with patients and other suppliers, and Biden administration has resisted a national infrastructure to link the national level, at state level and other types of data networks.
But hospitals with less resources have trouble sharing data, and federal IT health efforts have historically omitted many behavioral health and long-term care providers, said Julia Adler-Milstein, professor of medicine at the University of California-San Francisco. Many doctors, especially those who treat poorly served patients, find access to information on health file systems other than their own difficult. Patients also find it difficult to consolidate their files.
States have taken front with the sharing of medical data in multiple ways, some using monetary incentives or, less frequently, penalties to bring suppliers to share data with their exchanges.
Melissa Kotrys, Director General of Contexture, the exchange of information on the state designated by the State in Arizona and Colorado, said that most hospitals in the two states connect to the exchange. To encourage participation, Arizona offers MEDICAID annual incentives to suppliers who join and reach specific milestones, while Colorado offers incentives to rural suppliers.
For many years, New York State – which requires hospitals, nursing homes and other suppliers regulated by the State to join a regional network – compensate for the initial costs with federal support. The state continues to finance the platform which also links them to the support of the United States government. All state hospitals participate.
This year, legislators of at least seven states have presented bills aimed largely to improve the sharing of digital files and the strengthening of privacy protections, according to Alan Katz, a policy leader at Civitas Networks for Health, a national group representing exchange of information on health. Some of these bills, such as that of Michigan, propose to expand the capacities of already robust and existing exchanges.
In California, the Senator of the Democratic State Caroline Menjivar has written legislation that would set bases so that the State applies its 2021 mandate better than health care organizations share data on health and social services in real time.
Supporters say that the State needs greater application authority to guarantee compliance and support priorities such as better integrating health care and social services.
“I would not say that this is the last step, but this is a next step,” said Timi Leslie, executive director of Connecting for Better Health, the non -profit organization that sponsored the bill, SB 660.
In the midst of the Restrictive position of the Trump administration on transgender care and reports that health agencies share patient data with expulsion officials, the bill would exempt data from sexual assertion and immigration status, as well as other sensitive information, to be shared.
California Hospital Association is opposed to the bill, saying in a letter to the State Assembly that it would impose the application and costs on hospitals at a time when they are faced with federal and state cuts.
Claudia Williams, former leader of the exchange of health information, said that she doubted that the bill could conduct significant data sharing without providing continuous funding for incentives and infrastructure.
In a statement, Menjivar said that the state had already granted $ 50 million to hospitals and other organizations to help them meet the mandate requirements and invested significantly in technological upgrades. The bill has adopted the two chambers and is on the way to the governor for approval.
There is a large agreement in the midst of many federal and state efforts to improve the sharing of health files that the end point should be data in the right place, said Adler-Milstein of UCSF. “But the real process to obtain an entire health care system, incentives and policies to line up behind it is extremely difficult.”
This article was produced by Kff Health Newspublishing California Healthlinean editorially independent service of California Health Care Foundation.
