St. Jude Children’s Research Hospital isn’t like your average hospital or even your average children’s hospital. It not only treats pediatric patients with complex diseases (like cancer, blood disorders, immunodeficiency disorders and infectious diseases), but also conducts research and develops clinical trials.
The Memphis, Tennessee-based organization has an uncommon operating model as well. Approximately three-quarters of the funds needed to sustain and grow the hospital come from donors. Families never receive a bill from St. Jude for treatment, travel, housing and food, and no family is asked to pay co-pays or deductibles.
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With such a unique approach, the hospital requires IT that can meet its needs. That’s where St. Jude’s CIO, Keith Perry, comes in. He was appointed to the role in August 2015 and currently spearheads the organization’s information technology initiatives. One such effort is the St. Jude Cloud, which the hospital launched with Microsoft and DNAnexus in 2018. The platform gives researchers access to pediatric cancer genomics data and offers various bioinformatics tools, including data analysis pipelines.
In a phone interview, Perry chatted about the St. Jude Cloud, interoperability and the health IT problem he wishes he could magically solve.
Below is a slightly edited version of the Q&A.
MedCity: You’re the CIO of a pediatric treatment and research hospital. How is your role at St. Jude different from what your role would be like at an average health system?
Perry: That’s a great question. I spent the majority of my adult career in the specialty space at places like MD Anderson. I did start my career early on at HCA, but that was primarily at their corporate office site.
One of the differences we have [at St. Jude] is the sense of purpose. Everybody that works in healthcare has a unique sense of purpose. But we’re keenly aware … [people] are not here for a social visit or the birth of a new child. They’re here because they have some catastrophic, life-changing news and we’re here to help them.
The other thing that’s unique is we handle extremely complex cases. We’re dealing with compound problems on very, very small patients that have their whole life ahead of them. That involves changes in how we deliver technology.
And then unique to St. Jude, we’re dealing with specific types of cancer and how we understand that cancer and the evolution of that cancer. I think that research side brings a lot of unique challenges in terms of understanding the disease.
MedCity: You launched the St. Jude Cloud last year. How has the effort progressed, and what are the latest developments regarding it?
Perry: We launched it in April of last year. I’ll back up a little bit. What we didn’t want to do was launch something that was already in use. We spent a lot of time prior to early last April getting that built, primarily around “What problems are we trying to solve? How do we stop researchers from spending time away from a study?”
We launched it and since that time, we’ve had a tremendous amount of success. Since that launch, we’ve had a lot of people across 13 countries that have been coming to the data and coming to the tools and using it to exact their science.
MedCity: What else has St. Jude been up to in the realm of health IT?
Perry: I’ve been here for three and a half years. We’ve been a Cerner shop for the better part of 18 years. We’re partnering to make sure we’re using their technology in the most appropriate way. For example, how do we deal with medication that’s being dispensed and link that back to the electronic medical record?
About 60 to 65 percent of our patients are on some level of frontline therapeutic trial. We’ve worked on the integration between how you capture data on a research study and make sure it’s relevant and visible in the EMR.
Our patient journey/experience is a unique model. When you hear about St. Jude and think about our model — that no family pays for care — we sometimes take that to the extreme. We bring them to campus. We also have fun things to do and games. Our patient experience group has been partnering on how we do that from more of a mobile perspective. We’re working through the development of that platform. We’ve launched our St. Jude GO employee mobile app that focuses on what’s happening on campus.
We’ve completed a new data center on campus and that’s primarily driven by demand from our research community and the amount of data they’re producing.
MedCity: At HIMSS, we heard a lot about interoperability. How can the industry move the needle on that?
Perry: I think we’re quickly wearing that term out. It’s getting a lot of attention and rightly so, especially with the federal government jumping in with some great guidelines. That’s one of the biggest challenges facing the industry right now. This digital disruption does not happen without taking the data we’re sitting on and being able to share that with others who need that data.
Our view is we’ve been focusing on the interoperability challenges by sharing data back and forth with our affiliates. We’ve also taken the stance of this is not necessarily our data. We’re stewards of this data. It not only belongs to the patient but is also captured to help us understand the disease a little bit more. That’s why you see things like the St. Jude Cloud.
It’s bigger than just: How do you interoperate between EMRs?
MedCity: What technologies are currently overhyped in healthcare?
Perry: I would say that artificial intelligence in just the general sense is being overhyped in the short term but underhyped in the long term. I think we are using that term to mean a bunch of different things. We’re wanting it to sometimes stand on its own. It needs to find a way to be able to integrate into the day to day work of the physician and the patient.
MedCity: If you could magically solve one problem in healthcare or health IT, what would it be?
Perry: A desire for St. Jude to turn off its lights and say, “Our work is done.” That would be my ultimate goal.
My IT-related goal would be: Can we find a way to better understand the data we’re entering and use it downstream? What’s happening is we’re producing an inordinate amount of data. Nobody can argue against that. If I had to wave a magic wand, I would love to find a way for us to get better clarity of the value of that data in order to better understand disease, treatment options available, responses and long-term follow-up.
Photo: from2015, Getty Images
