The April 15 meeting of the Office of the National Coordinator for Health IT’s Health IT Advisory Committee (HITAC) meeting featured a heated discussion about public health data sharing, with clinical providers, public health officials and laboratory companies all expressing frustration with the current state of affairs. Many providers and labs said they were getting data requests from too many entities, while public health officials said they are often getting incomplete and lagging data.
Jim Jirjis, M.D., chief health information officer of HCA Healthcare, said his organization has 185 hospitals in more than 30 states. “What is really coming out is the cost of not having the kind of interoperability capability we are all envisioning,” he said. “Right now, our hospitals in California, are finding that almost down to the county level, there are not only different data being asked for but where it is the same data, data definitions are different. What we are seeing is an accelerating number of not just states, but municipalities, regions and others that are asking for information through a variety of transport mechanisms, in a variety of data definitions and it is just overwhelming our ability to respond, even though we want to and are willing. We are also seeing language like fines or imprisonment. The real problem is not having standards in place to make it easy to comply.”
Liz Thomas, director of government affairs at the American Clinical Laboratory Association, said that ACLA members have processed nearly 2 million tests to date to meet unprecedented demand. But she identified three health IT barriers.
First, commercial labs are facing multiple overlapping mandates for COVID-19 results reporting. “Since the beginning of the public health emergency, ACLA members have been reporting results to state and local health departments to ensure proper case investigations. Additionally, the CDC has requested that six ACLA labs report results to CDC directly in accordance with the recently passed CARES Act,” she said. “In addition to complying with these state and federal reporting requirements, commercial labs have recently received duplicative reporting mandates from various entities including: state health information exchanges, governors’ offices, Medicaid plans and government contractors. We have concerns that each additional data request takes away critical resources from laboratory response, and can lead to overlapping and duplicative data on the federal and state levels.”
A second challenge Thomas identified is incomplete patient demographic information collected by ordering providers. Labs do not typically interface with patients and can only report patient information collected by ordering providers, she said. Missing or incomplete demographic information collected by ordering providers can hinder public health response.
Third, she said, there is a lack of funding to support lab reporting mandates. “Data reporting mandates come at a cost both to labs and patient care by taking resources away from expanding testing capacity and turnaround time,” Thomas added. “Administrative and congressional action to date have included no designated funding for commercial labs to support expanded COVID-19 testing or the growing administrative burden of data reporting.”
Thomas said HHS could take critical steps to address health IT challenges in the COVID-19 response by:
• Streamlining laboratory reporting requirements on the local, state, and federal levels so that commercial labs can report COVID-19 test results in one standardized format;
• Educating ordering providers on the importance of collecting accurate and complete patient information, including demographics, when a test is ordered; and
• Investing resources in modernization of health IT systems to promote interoperability without placing an additional burden on laboratories that are already stretched for resources in the COVID-19 response.
Janet Hamilton, M.P.H., executive director of the Council of State and Territorial Epidemiologists (CSTE), said their ultimate goal is that data move seamlessly across three main actors — patients, healthcare providers and public health. “I want to highlight the need for data to be sent to public health with the same timeliness as it is available to the healthcare community,” she said. “Unfortunately, some of the policies we have had previously have implied that sending data to public health does not need to be as timely and this response with the speed at which the virus spreads, we need immediate, timely actionable data to arrive at public health’s door.”
Hamilton said CSTE is interested in advancing several core areas to support all phases of the response”
• Electronic Case Reporting (eCR)
• Laboratory Information Systems
• Electronic Laboratory Reporting to Public Health
• Syndromic Surveillance
• Electronic Vital Records System
“The biggest need we have today is that data is not reported or is reported with missing critical information. Those delays are leading to delays in contacting patients and identifying contacts and those at high risk, and creating policies as well as evaluating the control measures we have in place.”
Hamilton noted that case reports are either never made or are only able to be made by manual reporting methods — phone calls and faxes, leading to the need for public health to spend time digitizing the information rather than being able to immediately analyze and act upon it. “Laboratory reports, despite having an agreed-upon HL7 messaging standard with key components available in that standard, are missing patient address, patient phone numbers and demographic information like race and ethnicity. In talking with states, some states and most highly impacted areas are reporting that the demographic information of race and ethnicity is missing 85 percent of the time; patient address is missing as much as 50 percent of the time,” she said. “Obviously, we can’t locate or call someone if we don't have that information.”
Among the immediate needs CSTE things ONC can help with are aligning requests for data and ensuring there is support for reporting to go first to public health where the data are acted upon. “We are concerned about the emergence of point-of-care tests, and we want to engage and ensure that those are able to be reported to public health immediately in an automated fashion with identifiers,” Hamilton said. “Laboratory orders need complete patient information, and it needs to travel with the specimen even if it is forwarded to other laboratories. This is not just an issue for hospital labs; but we need this especially on the side of commercial labs.”
Ask on Order Entry (AOE) questions need to be answered at the time of order, she said. “We need standard public health access to EHRs for individual and batch patient lookup after we have received notification.”
“Planning for the fall, we feel that electronic case reporting is the transformation we need,” Hamilton said. “It provides us the point-of-care test, treatment, and vaccination information, comorbidities and the complete picture of information we need to address this response.”
Several HITAC members expressed frustration that more wasn’t being done immediately, and one suggested that Bill Gates and others could solve the problems during a weekend meeting.
In response, Hamilton said she appreciated the intensity of the discussion, but noted that a number of these issues have been identified and known for a long time. “There have been proposals but maybe not the will to correct some of them,” she said. “While I hear people say let’s create something new that would fix everything, I would really encourage a thoughtful dialog with state and local public health as well as other federal partners so we can prioritize key pain points. Some of those could be resolved relatively quickly. I want to underscore the paint point around missing demographic info on lab results. That is a case where even if there are other opportunities to query back and obtain that information, it still means lost time and lost lives. And that is not something that I think we can afford. This is not a new problem. We see it with other reportable diseases, where there is missing information, but it is now very much exacerbated.”
