Philadelphia-based Health Share Exchange (HSX) is one of five health information exchanges participating in the Office of the National Coordinator for Health IT's STAR HIE program, which promotes data sharing between HIEs and public health agencies. Claire Newbern, the chief epidemiologist for the Philadelphia Department of Public Health, recently spoke on a panel with HSX executives about the city’s use of HIE data.
“We have a lot of data needs around getting vaccination information into our systems from all the sites around the city. We're working with our health systems, our federally qualified health centers, and community-based sites to get that data in and also to make sure to track it and send it up to the federal level,” Newbern said. “And the same is true for testing. We have done a lot of reporting through our state up to the CDC and other agencies to make sure people know what's happening. Having HSX as a partner has been great. With the work around COVID testing, HSX helps us with identifying where we're missing information about hospitalizations, deaths and also race and ethnicity, which we very early on knew was going to be a big gap in our data.”
She said the Department of Health knew it had data sets it could call on HSX to help fill in. “We quickly came to HSX to ask them to help us with that data,” Newbern said. “We’re very much looking forward to going beyond COVID with this initiative, because we see where this will help us with all our surveillance activities.”
Bill Marella, the director for data analytics and quality for HSX, said the HIE’s approach is to help public health partners make new data connections based on their priorities. “Where there are gaps in their surveillance activity that HSX can help fill, we want to do that. There is a COVID-19 registry that we have stood up in partnership with Jefferson Health, based on the COVID data that we've been getting, as well as other information about the same patients.”
He said there also is a focus on governance. “We are looking at lab results, at clinical diagnoses, and sharing information about those patients with public health. We've also done an extract of our master patient index and we've indexed that for race and preferred language, specifically to assist in contact tracing,” Marella said. “What we were hearing from the Department of Public Health was that when they would do contact tracing, they would find out that somebody was a non-English speaker and they would need to get translators on the phone quickly. That just led to a lot of hang-ups and lost connections. Also with our master patient index, we are augmenting a risk index to look for patients who are at high risk and are most in need of the vaccine.”
Part of the effort involves closing gaps in the data feeds that are coming into HSX. “We still had a handful of members who were not sending CCDs, which is probably the richest source of data that we get,” Marella explained. “Those last couple of feeds are in process now. So within the next couple of weeks, all of the major health systems will be sending us CCDs. We're very grateful that our members have rallied around us in that way. In a way the pandemic has motivated them to contribute those last forms of data.”
“On the governance front, all the data that we've been sharing with public health has been under a waiver of enforcement of HIPAA,” Marella said. “The feds keep renewing that HIPAA waiver, but especially for new data connections and new data standards that we are supporting, we want it to persist beyond the COVID emergency. So we're looking at modifying our use cases, and putting the legal framework in place to allow those things to persist after the COVID pandemic is behind us.”
One of the new data connections involves standing up a new health IT standard called electronic case reporting (ECR) that Marella said is really going to be the path forward in terms of communicable disease surveillance in the future.
He described it as an application that sits alongside the electronic medical record, and proactively looks for patients who may be symptomatic of a communicable reportable disease.
Newbern was asked to clarify the fundamental difference between electronic lab reporting, which has been going on for years, and electronic case reporting.
She said that electronic lab reporting gets them basic demographics and details about the lab result, the day it was collected, what the result was, what the test was, and where it was taken, in addition to that demographic information about the person. “But very often, we're missing critical information and any clinical information is not included with that because a lab often does not have that information for somebody who walks in is tested,” she said. “ECR will help us fill out those critical input pieces of information around that case that we would otherwise have to call or fax or email health systems and ask for that detail. So this will reduce the work of the infection control practitioners and health systems and also will help us get the data faster in a way that we can consume and use much more quickly. That will help us be faster in our outbreak response.” Newbern said they aren’t live with ECR yet, but are in the testing process.
Marella added that for large health systems that are operating in many jurisdictions, part of the benefit of this ECR approach is that it involves an external knowledge base that maintains the rules around what's reportable in each jurisdiction a health system operates in, so it not only relieves the burden of manual reporting, but it also helps the health system maintain its compliance and make sure that the data gets to all the public health agencies that have rights to it.
Newbern said one thing that would make life easier for public health agencies is a national patient identifier. “We deal with many different data sets, so we have to do different types of matching to be able to integrate data from one data set to another data set. I lived in a country that had a National Health Index, and we all had our own unique ID for our healthcare,” she said. “We could use that number on the back end to bring our datasets together, and it saved us so much time and so much erroneous matching and made our lives so much better.”
Marella said that as an HIE, HSX also deals with this issue every day. “An entire industry has grown within health IT around trying to identify patients. What most people use now is this probabilistic algorithm to match patients, and it is still imperfect,” he said. “We're constantly having to look back and clean that up. The lack of a national patient identifier also has serious patient safety implications. A national patient identifier would solve a lot of those problems very quickly.”
As far as his wish list, Marella said one challenge he would like to see addressed is getting data from field sites. “We've seen pop-up sites for testing and for vaccination, and that data is just kind of leaking out. We hope that it's going to come back into the systems that we have set up to monitor the vaccines, and we hope that it's going to get into the community lab feeds and get shared through the HIE, but we know there's a lot of leakage of that data, and it would be beneficial and usable, if we can harness that.”