What Dr. Ruben Amarasingham observed years ago was hardly unique for a physician. But it was transformative.
A patient received treatment at Parkland for a chronic hypothyroid that had him hovering near comatose. The patient eventually recovered and bounced out of the hospital with the right medicine to manage his condition. He first went to a rehab center then checked into a homeless shelter. He stopped taking the pills. The shelter didn’t know what he had been prescribed, so his health declined as he went without his medication. The cycle began again. And it repeated five more times.
“These community organizations, they don’t know where their clients are going,” says Dr. Anand Shah, vice president of clinical services for the nonprofit Parkland Center for Clinical Innovation. “Like, who else is serving them? Are they providing the same service that someone else is?”
Shah is Amarasingham’s second-in-command at PCCI, which recently won a $12 million W.W. Caruth grant to create a database of electronic information that marries a patient’s health details with socioeconomic factors that could lead to poor health and hospital visits. Those two values have never been linked before to this scale.
From its perch on the 11th floor of an office building off Interstate 35 near U.S. 183, PCCI, once affiliated with Parkland but now its own nonprofit entity, is trying to smash the silos that separate data and link patient information to boost efficiency and slice hospital readmissions. To put it simply, the many subsets of information are separated and do not communicate. Shah hopes to change that.
Ideally, PCCI’s project will create a profile that gives the physician and the social worker a better idea of the patient’s health by listing their treatments and any other outside services rendered.
It’s not ready yet, and likely won’t be until at least 2015. PCCI is working in tandem with community groups to shore up its database while ensuring that the patient’s information remains private and secure. In 2010, the Affordable Care Act provision known as the Readmission Reduction Program galvanized data initiatives like PCCI’s.
Hospitals are now penalized for readmissions, the rate of the penalties increases each year until 2015. Experts believe that linking data together can improve population health by identifying trends and risk factors. And PCCI isn’t the only game in town.
“In a way, it’s sort of like the Minority Report movie meets healthcare,” says Dr. Ethan Halm from his office deep inside the UT Southwestern campus. “Here, we’re using the healthcare information to try to identify people at risk of bad things and then trying to intervene before bad things happen.”
Halm is chief of UTSW’s Division of Outcomes and Health Services Research. He also practices general internal medicine and, like Amarasingham, can rattle off plenty of patients whose outcomes would likely improve if physicians could access their health history.
“Most EMRs (electronic medical records) are IT roach motels,” he says. “Data goes in, but you can’t get it out. We’ve been doing a lot of work over the last several years actually extracting data out of the electronic medical record for actionable intelligence.”
UT Southwestern has begun an outreach strategy for patients susceptible to heart disease, the most common readmission condition, and liver and colon cancers. It uses patient records shared between the flagship Parkland Memorial Hospital and its 12 community clinics. And Parkland being Dallas County’s sole public hospital, Halm has captive audience that stands to benefit.
“Whether someone is staying at an East Dallas clinic or anywhere else, we have all this information about them,” Halm said. “And it’s the only show in town, so it’s very unlikely people that people with no insurance will pay out of pocket several hundred dollars to get a cancer screening test or to get care elsewhere.”
Parkland has cut the risk of 30-day heart disease readmissions by 25 percent, Halm said. But UT Southwestern is also part of broader data initiatives. It is one of 11 institutions in the country participating in a project led by the federally funded Patient Centered Outcomes Research Institute, which was created by the Affordable Care Act in 2010.
UTSW is a member of the Greater Plains Collaborative, which is charged with bringing together patient data for more than 6 million patients, largely poor or in underserved regions, in seven states. The data it finds will meld with other collaboratives throughout the country, eventually forming a huge net of patient data that researchers hope will illuminate patterns that identify the most effective drugs, treatments, and devices with more nuance than ever before.
For instance, the database would help drug manufacturers identify possible trial participants quickly for rare diseases like Lou Gehrig’s. It may also help researchers find antibiotics or drugs that are more effective among different genetic profiles.
The ultimate goal being, in Halm’s words: “How do we kind of leverage data to facilitate research, new knowledge, develop new therapies, and figure out what does and what doesn’t work to improve care?”
But these projects are logistically difficult, particularly for working around privacy concerns. PCCI used $980,000 in seed money to research how to create the database without violating HIPAA laws. It was the only way the W.W. Caruth Jr. Foundation would have approved the $12 million grant, said Brent Christopher, its president and CEO.
“It’s not likely that the trustees would’ve gotten a comfort level to invest that amount of money in a system without knowing the technical capacity and their ability to deal with the enormous personal privacy concerns linked to the data,” Christopher said.
PCCI is continuing to experiment with ways to bolster privacy for those who choose to opt-in to the program. And it’s also begun retrieving information from Parkland and from the participating community centers. By early 2015, Shah hopes to have four community organizations participating with Parkland. All patient data from participants will be overlaid and accessible—that’s the goal.
On a recent Wednesday morning, a handful of men and women ambled outside the Crossroads Community Center on Young Street downtown, not far from the Dallas Farmers Market. They gradually ascended the steep walkup to the second floor, where they found the smiling face of a volunteer and a packed waiting room that resembled a DMV. They’ll walk out of here with food to feed their families 30 balanced meals.
This is one of the community organizations taking part in PCCI’s initiative: “We move a lot of food,” says Rev. Jay Cole, the executive director. “But where are the gaps?”
Cole, tall and energetic, says he’s always been interested in those gaps. In 2007, Crossroads brought on a registered dietitian and began providing food based on the guidelines of the Food Pyramid. Volunteers now guide the clients through a computer program that tracks the food they select. It’s personalized, they’re no longer sending the needy home with a generic bag of food.
And so, for Cole, the PCCI data initiative is simply the next step in personalization for the 47,0314 unique clients it’s served since 2007. Eventually, volunteers will be able to see whether the clients are diabetic or diagnosed with hypertension. The information will help them structure the food they provide and the questions they ask. They can help make each person healthier: “There are no losers in this game,” he says.
“At the end of the day, I think this is something that makes sense to everybody,” Shah says. “It’s just the timing we think is finally right based on the way healthcare is moving and where technology is.”