The widespread adoption of electronic health records (EHR) promises many benefits, but one of the biggest for public healthcare organizations is the treasure trove of information that's routinely created from every doctor-patient encounter. Slice and dice these gradually expanding databases and health officials might find gaps in care plans for individual patients, better ways to assess the quality of entire clinics and much-needed help compiling reports for grants and regulatory compliance.
Unfortunately, that promise doesn't always match reality, as public health agencies on the front line of HIV/AIDS care are learning. Consider that the Ryan White Care Act became law in 1990 and now sends about $2 billion a year to states, local municipalities, and primary care providers for outpatient HIV/AIDS care and related services, such as mental health counseling.
In return, the Health Resources and Services Administration (HRSA) requires grant recipients to file detailed reports about services they're providing and the makeup of patients receiving care. In complying, resource-strained public facilities often manually comb through records to come up with the required information.
So when EHRs arrived on the scene, Dr. Ronald Schut, medical director for the Positive Care Center at Minnesota's Hennepin County Medical Center, was optimistic. After all, with the sea of patient data now being collected, wouldn't he now have tools to skim the surface for the information he needed for reports and care plans? Not quite.
"We thought it would be fairly easy until we learned that no, there really wasn't a program sitting on top of our EHR that allows you to do this," Schut recalled. "You really can't do it easily on a regular basis with an EHR unless you have a minion of data analysts."
So in late 2010, the Positive Care Center flipped the switch on a new software application and related services called Population Manager, which was outfitted specifically to harvest data about HIV/AIDS patients from EHR systems maintained by PCC. It's one of a growing number of data analysis options available to help organizations better serve the HIV population. The application also provides a model for EHR add-ons designed to sift data on other types of chronic diseases.
The tools fill a gap in standard EHRs, which do not offer reporting tools or analytics out of the box to make it easy for clinics to find and report data sought by HRSA and others. This used to mean that healthcare IT departments had to step in to write expensive software customizations to their base EHR or compile and run specialized reports to update the HRSA numbers. In a world where most healthcare technology departments have their own queues of work orders, completing either of these options could take months if not years.
Now HIV/AIDS-specific tools eliminate much of the manual data entry and manipulation required to create reports for the Ryan White Care Act and to manage patients. Examples of applications currently available include Care- Ware, developed by HRSA's HIV/AIDS Bureau 10 years ago, and one of the earliest applications for collecting and reporting data about HIV/AIDS patients. Agencies and clinics can download the software free from http://hab.hrsa.gov/careware/ to capture basic patient information about demographics, services, and medications.
CareWare is now being taken beyond its collection and basic reporting roots into a comprehensive program that enables cities and states to use secure Internet connections to knit together data from individual sources and form a larger clinical data map of a regional HIV/AIDS patient community.
Population Manager, from Madison, Wisc.-based Forward Health Group, also provides healthcare organizations the expertise of "data stewards" to help collect and mine their internal EHR information for relevant population health data on HIV/AIDS.
Lab Tracker HIV"Rather than working in conjunction with general-purpose EHRs, Lab Tracker HIV from Belgiumbased Virco Lab is an EHR in its own right, but one created for a specific disease. In addition to organizing information relevant to HIV/AIDS treatments, the software can analyze the underlying database to create compliance reports.
Helping organizations compile patient demographics to justify Ryan White program grants is a core capability of these programs. But many clinics are going a step further and proactively using information to measure the quality of their patient care.
Schut believes that meeting quality measurements similar to the "D5," a set of five goals for optimum diabetes care, could eventually become a requirement for Ryan White funding. Yet HIV/AIDS cases include about 20 performance measures as standard care protocols, which would significantly increase the data-gathering burden. Without a tool that can easily extract data from EHRs, clinics would need "an army of people pulling data from charts" to track 20 unique care variables for 1,400 patients, Schut says. "We could not do that."
Other factors are pushing organizations to adopt these types of applications. Healthcare providers last summer received final regulations defining the criteria under which they can become eligible for thousands of dollars in federal incentive payments for becoming "meaningful" users of EHR systems.
Criteria that providers must meet include being able to measure the quality of clinical treatments offered by their clinicians. Tools like CareWare, Population Manager and Lab Tracker HIV"by assisting providers to compare treatments across common conditions and denominators"could help providers grab the meaningful use brass ring, public and population health officials say.
"Are the patients I'm serving getting the care that they ought to be getting and can you document that in a reliable and valid fashion?" says John Milberg, project officer for Care- Ware at HRSA's HIV/AIDS Bureau. "We do a lot of things that [EHRs] don't do."
But data mining isn't all about slicing and dicing numbers to satisfy reporting requirements. "It allows [healthcare officials] to not only monitor the clinics as a whole, in aggregate, but also to hone in on what individuals may be falling through the cracks in a clinical sense," Milberg adds.
Schut says his staff can now sort patient lists across various categories, such as gender, those infected with HIV, those receiving anti-retroviral therapy, or patients diagnosed with AIDS. "Then we can look further and ask, "˜Of those persons who are HIV infected and have been seen by our program, how many have had a pneumovax recorded in the electronic health record?'" Schut said. "We'll be able to see if we have met our goal of adequately vaccinating our patient population."
The new software tools can also provide caregivers the ability to analyze ancillary issues that affect patient health. For example, they can monitor cervical cancer screening rates by program and by provider. "Now we can do it without having to submit a proposal to a data analyst in IT and hearing "˜You might get this in formation in 15 months,'" Schut says.
Similarly, the San Ysidro Health Center, an independent community clinic that contracts with the University of California-San Diego to provide HIV/ AIDS services, uses Lab Tracker to develop reports for Ryan White Act grants. The tool also helps care team members to query patient records for research questions and care plans.
"If I want to know how much of my total patient population has received the influenza vaccine within the last three years, it takes less than a minute," says Dr. Theodore Katsivas, assistant clinical professor at the UCSD Department of Medicine and an HIV specialist at the clinic. "I don't know how