Fresh out of college in 1982, computer science major Daniel Porreca landed a degree in technology operations at Marine Midland Bank. He was working at Computer Task Group in 1997 when his 5-year-old daughter Elise ended up with a rare, stubborn infection that doctors in Western New York struggled to treat.
“What I found out pretty quickly is that doctors knew what they knew, and what their close network of associates knew, but beyond that there was not a lot of ability for them to use technology to figure out what was going on with my little girl,” Porreca said.
Elise recovered from her infection, and Porreca turned curiosity over her care into his current job as executive director of HEALTHeLINK, which seven years ago began to gather electronic medical information from hospitals, doctors and other health care providers across the region. The goal: share that information across a wider swath to improve treatment, improve personal and community health and lower costs.
“In some ways, it’s kind of obvious that if doctors have better information, they can make better decisions,” said Porreca, 55, a West Seneca native who lives in Lancaster with his wife, Lee. They have three daughters, Katie, 27; Elise, now 24; and Jacquie, 21.
Q. How has the idea of sharing electronic medical records taken shape in the region?
Think about it, you walk into an emergency room and those doctors don’t know you. They’re trying to piece together information to make an assessment and put together a treatment plan. Data is a key thing. When you think about the presence of HEALTHeLINK in that scenario, they can get information about any labs that have been done, any radiology studies. If you’ve been in any other hospitals, they can get the discharge summaries that might be helpful in addition to the exam and the interview. That’s the power of HEALTHeLINK.
Q. Where do the funding sources come from for the nonprofit?
Initially, the charter members were responsible: Kaleida, Catholic Health, ECMC, Roswell and the payers: BlueCross BlueShield of WNY, Independent Health and Univera. Think about it, they’re competitors and in a lot of cases adversaries when they start negotiating, but they really came together for the benefit of the community. … We’ve also gotten a number of state and federal grants that have helped build out additional functionality.
Q. How many staff members do you have and what are their backgrounds?
We have about 40 people from a variety of backgrounds. There’s technology folks, people working with our doctors, an account management team. There’s ongoing operations because as the data comes in, there’s cleansing (standardizing) of the data that has to happen. There’s business analysts who handle reporting requirements. There’s all kinds of projects going on, so there’s project management to help us keep things organized and priorities. Plus we have our board of directors that sets the direction and priorities for the organization. Dr. David Scamurra is the chairman.
Q. What are some of the most immediate challenges you’re looking to overcome the next few years?
That’s a tough question because there’s so much opportunity. That’s what makes it so much fun. We have a list of projects that are so numerous, we have to cut it off. We’re always thinking, what can we do next? Continuing on the core things we’re doing – increasing the number of doctors using it and making it easier for them to use, increasing the number of patients that have signed their consent forms and helping them understand what the value is to them – and as time goes on, making sure the quality of the data that comes in is at the highest level possible. In order for population health activities to happen, in order for researchers to use the data, the quality has to be good.
There’s no question there’s value to the data. The question is, “How easy is it to get?” There is such a thing as too much information, data overload. Part of our challenges is figuring out how to make it as easy as possible for the doctors to use HEALTHeLINK to the extent possible within their workflow.
Q. Somebody has to interpret that data, correct?
Doctors can do a pretty good job. When you start getting into population health and trying to analyze population data, then you have researchers at the university or at Roswell that get into analyzing data and trends. Basically, if the docs can get information on you that was generated in other health care settings ... they can start making decisions with you about your health. If there’s a high incidence of lead exposure in one area, we can start to hone in and ask, “Why is that?” Smarter people than I can start figuring out why. We have the data that can point them in the right direction. Erie County Department of Health is very interested in what we can do from a public health standpoint. They’ve been huge users of HEALTHeLINK.
Q. So you might be able to find out if asthma rates are higher near the Peace Bridge, for instance?
We know where people live by zip code, we have their home address, so that’s the type of research we can do if we have the data together.
Q. Going back to what you were looking for, for your daughter, are you farming out some of this information out to researchers in this area to try to create a profile about how certain conditions might be best managed? Does it go beyond Western New York?
We have a well-defined, strict process for releasing data to researchers. It would be de-identified data and would have to go through a data use committee that analyzes the requests for the data. But yes, researchers are coming to us and want to leverage this huge number of clinical data sources. Protecting the privacy of individual patient data is extremely important to us. UB has a clinical transformation science award, CTSA, that they just got. There are 60 institutions across the country that are part of this CTSA network, so there may be opportunity to leverage data from other regions. So we’re not near yet what I was hoping for back in 1997, but we’re making strides. The data now is digital in nature so you can start analyzing it.
Q. The greatest challenges overcome and those that still lay ahead?
We see the momentum building on more and more adoption and use. That’s a function of people using it and recognizing the value of it, and spreading the word. We know anecdotally and based on the research that we’re reducing the number of unnecessary tests and giving doctors the ability to have better information so they can make better treatment decisions.
Q. What have been the greatest surprises?
Nothing happens as fast as I want it. I don’t know if that’s a surprise or an observation. My director of operations, Steve Allen, has been here six or seven years now and when he interviewed, one of the questions he asked me was, “What is this organization going to look like in five years?” My answer was, “I have no idea.” If I would have guessed, I would have probably been wrong and if you ask about five years from now I’d probably be equally wrong. Things happen so fast and you start getting momentum and all of a sudden priorities shift because you start seeing opportunities. It’s all positive, or let’s say 87 percent of it is positive. We’re in an environment that is constantly evolving. Technology is that way. You start introducing technology and people start using it and start thinking about other things: “If it only did this, if it only did that.” They’re great ideas, and we have a physician advisory committee that we lean on: “How are we doing? What can we do better? How can we make this more useful?”
Q. Can you give some examples about how HEALTHeLINK and the larger exchange has helped patients and saved money?
In an emergency department study, we put one of our people for six weeks in three different emergency departments. For a certain number of patients that walked through, we pulled data on every one of them. There was a control group that the data was not getting pulled on, and then we compared. We asked doctors, “What did you do differently because you had access to HEALTHeLINK information?” We got some very positive results along the lines of, “I didn’t order this test.” “I ordered a different med.” “I did this instead of that.”
Separate from that, we had a Brookings Institute fellow who did analysis just on the raw data and looked at the ordering patterns of the doctor who had the data versus not. In one of the emergency departments, there were 52 percent less labs ordered and 36 percent less radiology ordered. In another, it was 25 percent less labs and 26 percent radiology, and in the third there was 47 percent less radiology tests ordered. This is less costly for hospitals because they get a bundled payment for the ED visits. The patient may not even realize HEALTHeLINK saved them from going through another CAT scan and getting exposed to unnecessary radiation or having to get stuck with another needle to get more blood drawn, but the doc knows it because they would have ordered this otherwise.
Q. What kind of information does HEALTHeLINK share and who has access in the region?
We have labs, radiology, all kinds of different reports that come in from the hospital systems, medication history. We’re now in the process of bringing data in from the practices’ electronic medical records. So as time goes on, we’re getting a bigger and more complete picture of the patient. Early on, labs, radiology and meds were a big deal. Now we’re starting to get more and more data. In order to get access to a data, a doctor and their staff signs a participation agreement with us which binds them to our policies, which are local policies that comply with state and federal law. We do audits to make sure those offices are compliant with our policies. And we take people through training. Use of system is one thing but what is proper use? That’s part of the training. We are not storing Social Security numbers. The way we identify is typically name and address, basic demographics.