Epic Systems CEO Judy Faulkner recently urged some of the largest health systems in the country to sign a letter opposing proposed rules designed to make it easier for patients to obtain their medical information and share it with apps.
About 60 of these health systems have signed it.
The letter, which was obtained by CNBC, was addressed to Department of Health and Human Services Secretary Alex Azar and opposed proposed rules designed to help medical information flow more easily between health systems and patients. The rules also aim to make clinical data accessible through application programming interfaces (APIs).
Epic, which is privately held, sells its electronic medical record software to hospitals across the country and is one of the largest health-technology companies in the U.S. An Epic installation is a major undertaking and can cost upwards of $1 billion for a major health system to implement.
Epic's CEO Judy Faulkner previously urged health care executives to take a stand with her: "HHS needs to hear from you so they understand that you feel these issues are important," it says. "Very little time is left."
A spokesperson for HHS told CNBC that it did indeed receive the letter. "We appreciate all stakeholder feedback as we continue to finalize the rules," they said. "Our ultimate goal is to ensure that patients are able to easily access their electronic medical records."
The largest technology companies, alongside patient advocates and caregivers, have taken the opposite stance and have spoken out in favor of the rules. Apple, Microsoft and Google recently joined a call with a non-profit called Carin Alliance to discuss ways to get the rule finalized and released. These companies favor the rules, in part because greater interoperability between systems that store medical records could help them move into the $3.5 trillion health care sector.
"There are many health systems that have deep concerns regarding the rule, and they've shared those concerns with HHS," Epic said in a statement to CNBC. "We are supportive of the goals of the proposed regulations, but we believe that important changes must be made to the rule before it becomes final in order to protect the privacy of patients and their personal health information. We appreciate the work that HHS is doing to incorporate different perspectives and ensure that the final rule is a good one."
The letter reads, in part, "While we support HHS' goal of empowering patients with their health data and reducing costs through the 21st Century Cures Act, we are concerned that ONC's Proposed Rule on interoperability will be overly burdensome on our health system and will endanger patient privacy. Specifically, the scope of regulated data, the timeline for compliance, and the significant costs and penalties will make it extraordinarily difficult for us to comply."
The letter goes on to recommend some changes, including more clarity around health information related to family members, and a longer timeline -- at least 12 months to prepare and 36 months for "development of new technology required by the rule."
It was signed by health systems including Ardent Health Services, Atrius Health in Massachussets, Bay Health in Delaware, NYU Langone Health in New York, Parkview Health in Indiana and Ohio, University Health System in Texas and UW Health in Wisconsin among others. Several life sciences companies also signed it, including Exact Sciences, maker of a diagnostic test for colorectal cancer.
A handful of organizations were also listed as sending their own separate letter.
One doctor who signed says he shared Epic's privacy concerns as the number of proposed medical apps skyrockets.
"There are tens of thousands of health care apps," said Neil Calman, MD, chairman of family medicine at Mount Sinai in New York and president of the institute for family health, in an interview.
"Getting these big computer systems to communicate in a predictable and secure way took a decade and now people are writing these apps in all different languages. There's no possible way a system that has been in development for decades now could all interface with all these apps and keep information secure. This needs a lot more thought, and more structure and regulation."
Some health IT experts note that the letter has not been signed by some of the largest health systems in the Epic ecosystem, and they say that's significant.
"Their absence represents a thundering silence," said David Brailer, the first National Health Information Technology Coordinator, appointed by George W. Bush. "Many health systems are quietly discussing how the data access and data fluidity actually benefits them in the long-run."
Here is the full list of health systems and health companies that signed the letter, not including those who chose to send their own:
Access Community Health Centers; Community Health Center Network, Alameda Health Consortium; Altru Health System; Atrius Health; Adventist Health Portland; Affirmant Health Partners; Lovelace Health System; Arc; UT Health Athens; Ardent Health Services; Bay Health; Buffalo Medical Group; Christie Clinic; Deaconess Health System; Genesis Healthcare System; Catholic Health; Community Health Network; Exact Sciences, Group Health Cooperative, South Central Wisconsin; Charlotte Eye Ear Nose & Throat Associates; Confluence Health; Fresenius Medical Care; Gundersen Health System; Guthrie; HonorHealth; Institute for Family Health; Mercy; UnityPoint Health-Meriter Hospital; Hospital Sisters; HSHS Wisconsin; Iowa Specialty Hospitals & Clinics; Mercy Care; VHS; HSHS St. Clare Memorial Hospital; HSHS St Joseph's; HSHS Illinois; Mary Washington Healthcare; Mercy Health Services; Middlesex Health; Beth Israel Lahey Health, Mt. Auburn; NYU Langone Health; PeaceHealth; Piedmont Healthcare; Northshore's Evanston Hospital; OhioHealth; Pembia County Memorial Hospital; Pine Rest Christian Mental Health Services; Norton Healthcare; Parkview Health; Permanente Dental Associates; Prevea Health; River Valley Primary Care Services; Singing River Health System; University Health System; Vancouver Clinic; Riverside; Southcoast Health; Titus Regional Medical Center; UT Health San Antonio; Wellstar Medical Group; Self Regional Healthcare; SSM Health; UHS Inc. and UHS Hospitals; UW Health; West Virginia University Health System.