Navigating the Promises and Perils of the Data Age

Two and half years ago, Duke University stood ready to welcome its newest Rubenstein Fellow, Eric Perakslis, PhD, to campus. A nationally known expert in health information technology and cybersecurity, Perakslis had already charted a career spanning leadership positions in the pharma and tech industries, academia, government, and the nonprofit sector. As a Duke Rubenstein fellow, he would bring to bear his extensive knowledge and experience while helping Duke transform its own health data assets to improve patient care and accelerate research.

There was just one small problem.

“Technically, I was supposed to start at Duke on February 1, 2019,” Perakslis says. “But I had a snowboarding accident and had a compound tib-fib fracture that kept me in bed for the next month. So I started my job from a hospital bed, basically.”

While awaiting treatment for pain and fever following surgery to repair his leg, he found himself carefully critiquing the patient flow design at the hospital.

“I’m always thinking about how to improve process. I just can’t turn it off,” he says with a laugh.

The decision to start work from a hospital bed despite a severe injury is representative of Perakslis’ active and determined spirit. He brings the same energy and enthusiasm that characterizes his approach to sailing, snowboarding, and skiing to his work, where he has built a remarkable career in information technology and health data science.

In February 2021, after finishing his stint as a Rubenstein Fellow, Perakslis joined the Duke Clinical Research Institute (DCRI) as its first chief science and digital officer. Less than a year after joining the DCRI, his portfolio again expanded after he was named chief research technology strategist for the Duke School of Medicine in October. With the addition of this new role, Perakslis is helping both the DCRI and the School of Medicine navigate a fast-arriving future that is full of both new possibilities and new perils.

One Head, Many Hats

A career in health care technology was not an obvious career path for Perakslis, who grew up in a working-class neighborhood south of Boston, Massachusetts. But that environment, where many of his neighbors worked in mills and factories, did provide him with a number of examples of things he didn’t want to do for a living.

“No jobs where I have to drive my car through a car wash before I go home every day,” he declares.

He escaped that fate, leaving the city for college and ultimately earning a doctorate in biochemical engineering at Drexel. Perakslis has never actually worked as a chemical engineer, but he credits his preparation for the field, which he describes as “a ridiculously good pre-med and pre-science major,” with providing a springboard into the world of clinical medicine and research.

This beginning evolved into more than a decade and half spent working in the health care and pharmaceutical industries, where a facility with information technologies and sense for the possibilities of such tools, both good and bad, developed into a formidable expertise in health IT and cybersecurity.

Along the way, Perakslis also became involved in global health through his volunteer work with Partners in Health and with the international aid group Médicins Sans Frontières (MSF), often known as Doctors Without Borders, which included work in Ebola “hot zones.” There he helped develop, test, and deploy an electronic health record system that could be used by health personnel wearing Biohazard Level 4 protective gear in extremely difficult field conditions.

“It’s a job that allows you to be all the things you are,” he says of his ongoing work with MSF. “You get to see people at their best and worst — but mostly at their best.”

‘Remember the Small Stuff’

Perakslis has seen the health care system from multiple perspectives as well: he has spent roughly one-third of his life as a patient.

“I have familial melanoma as well as renal disease in my family,” says Perakslis, who at the age of 19 lost his father to cancer and then, roughly 19 years later, was himself diagnosed with Stage 3 renal cancer. “At this point, I’m going on being a 20-year survivor,” he says. “I’m the kind of success story we always said would happen.”

Perakslis says that the experience has conferred a different kind of understanding and perspective.

“You can’t help but take your health and the health of the people you love personally,” he says. “You remember the small stuff.”

In 2011, following more than a decade overseeing physical labs, data science, information technology, and informatics at Johnson & Johnson pharmaceutical research and development division, Perakslis was appointed chief information officer and chief scientist in informatics for the U.S. Food and Drug Administration. At the FDA, he oversaw the modernization of the agency’s computing infrastructure, which included an updated cybersecurity program that would meet new federal security requirements.

Although the transition from industry to public service was relatively smooth, there were some surprises.

“The part that was actually new to me about FDA,” he notes, “was this constant evolving understanding of how complex their mission is…and the decisions are just brutally hard to make. You leave a permanent respect and admiration for the public servants there.”

‘A Professional Nudge’

When Perakslis arrived at Duke as a Rubenstein Fellow in 2019, one of his most important tasks was to apply a fresh perspective to IT and data science challenges faced by the health system’s care and research enterprises.

“I introduced myself as a professional nudge, among other things,” he laughs. The self-deprecating title reflects the kind of role Perakslis is often asked to fill: the expert capable of providing a fresh and candid perspective that helps shake up the status quo.

His decision to stay at Duke and embrace a new role at DCRI following the fellowship boiled down to an opportunity, he says, to simply “do good stuff with people I like in institutions that are worthy of it.”

He describes the transition as a natural evolution of the work he was already doing with the School of Medicine, including the development of a strategic plan for the DCRI as it underwent a process of transformation and modernization. He worked closely with Duke University School of Medicine Dean Mary Klotman, MD, and then DCRI Interim Director and Department of Population Sciences Chair Lesley Curtis, PhD, as well as with incoming DCRI Director and Vice Dean Adrian Hernandez, MD, whom he credits with offering a compelling vision for the research organization’s future. Hernandez’s vision, says Perakslis, includes a pragmatic focus on bringing “patient-and-consumer-centric” clinical research right to the patient’s doorstep.

“Currently, clinical trials are ideally suited for the cost control and logistics of large medical centers, and most patients don’t live near those,” Perakslis explains, noting that a more patient-centered approach, such as the one the DCRI is spearheading, would meet patients where they are, potentially opening the door to including many people who had previously been excluded from participation in clinical research.

Such an approach opens up new possibilities in terms of conducting high-quality studies in real-world settings that reflect the actual lived experiences of the people who are most likely to be receiving the therapies and medical products developed through that research.  It also entails embracing a panoply of new technologies and data sources, including patient-generated data from wearable technologies such as smartwatches — a domain where Perakslis’ knowledge of digital health tools, IT systems, cybersecurity, and regulation all come into play.

But compelling visions are not the only thing that drew Perakslis to the DCRI: in addition, there was the sheer fun factor of, as he puts it, “working with the best researchers and motivated clinicians” focused on big team goals.

The Shape of Things to Come

As longstanding inequities in health and access to care are compounded by a hugely damaging and stubbornly persistent global pandemic, and as new tools and technologies take center stage, Perakslis and his colleagues at DCRI and the School of Medicine will shape a baseline for health care that may be very different from what came before — one in which the safety, security, and performance of software products and information technology are critically important.

“My experience with these types of things (is that) after pandemics, things don’t revert technologically back where they were,” he says, noting that while there have been numerous advances, not all of the changes have been positive.

“In medicine, we have to understand that everything has benefits and risks, and we don’t always see the risks,” he says. “Using telehealth as an example, the positive impacts during the COVID pandemic are well-documented. But the negative impacts of care moving home — such as the loss space for safe and private ‘closed door’ conversations with health professionals for victims of intimate partner violence — seldom make the headlines.” 

Amid the flux of the last year and half, Perakslis is now busy extracting meaningful lessons to guide future efforts. Recently he spoke at DEF CON, the world’s premier hacking conference, where he made the case for reimagining biodefense — previously the domain of military and national security organizations — as an area of active concern for public health agencies and health systems, and their accompanying IT infrastructures. And it’s an area where issues of trust and credibility may be at least as important as the technical dimensions, particularly when medical misinformation is a key component of the threat to public health.

“Most people still don’t get it,” he says. “They think, ‘Cybersecurity is an IT problem; it’s not something doctors need to understand.’ Well, actually that’s not true.”

These concerns led Perakslis and coauthor Martin Stanley to collaborate on a book on digital health that presents cybersecurity issues in a context that doctors can find immediately relatable: as a balance between benefit and risk.

Despite his long and continuing immersion in cutting-edge health technology and cybersecurity, Perakslis sees the larger issue of the intersection of technology and health equity as the defining national and global challenge for 21^st century health care, noting that the benefits of recent innovations, such as the rapid expansion of telehealth during the COVID pandemic have not been equally distributed, nor have the downsides.

“The only thing that’s universally true is that the progress will be unequally positive for those that already have resources and the things they need and unequally bad for those that don’t.”

Continuing to perpetuate systems that privilege some groups while chronically underserving others, he says, is both unjust and perilous — a lesson that is being driven home amid a global pandemic that ignores the lines drawn on maps.

“I can’t think of bigger emergency than that,” Perakslis says. “This marble we all live on is pretty small, after all.”

This combination of big-picture perspective and close attention to detail has been a hallmark of Perakslis’ work, and it is likely to continue to shape his efforts as he oversees a spectrum of technology development and implementation that runs the gamut from the engineering of individual software applications to technology strategy for the School of Medicine as a whole. It’s a lot of responsibility, but Perakslis is up for the challenge.

“Technologically, the tools we need for health equity and digital justice already exist,” he says. “Reinventing them is a waste of time and resources that could be spent applying these tools today to those without access. It’s not about technology or invention — it’s about application and improving outcomes and access today.“

Jonathan McCall is the communications director for Duke AI Health. Photo courtesy of Eric Perakslis.