CIOs Join Forces to Battle Cancer

What CIO would divulge the intimate details of his mobile technology or cloud strategy with a major competitor? Exchange governance tips with her counterpart at a rival firm? Join forces with a seeming archrival to develop a data-sharing platform?

Jay Ferro would. So would Jeff Como. Robert Machen, too. And they do. Ferro is the CIO of the American Cancer Society (ACS). Como leads the technology organization for the Leukemia and Lymphoma Society (LLS). Machen is CIO at ALSAC, the fundraising arm of St. Jude Children's Research Hospital. Their nonprofit organizations compete for funding, for research attention, for hearts and minds. But the three CIOs have forged an informal alliance to share IT best practices, technology tips, and personal support.

"Sure, we're in competition for the same donor dollars. And maybe it sounds like archrivals Pepsi and Coke getting together and saying, 'Hey, let's just split the market,'" says Ferro, who says the three met at a conference for CIOs at nonprofits after he joined ACS two years ago. "But we're in it for a higher calling."

A similar coalition of like-minded CIOs has emerged among the IT leaders who support the work of the National Cancer Institute's clinical and research centers throughout the country. Once fierce competitors for major grant dollars and scientific discovery, their organizations now increasingly collaborate as they seek the next breakthroughs in treating a disease affecting one in three women and one in two men. And leading this confederacy of clinics are their CIOs, an increasingly close-knit band of professionals, many of whom have dual backgrounds in research science and IT.

See these sidebars at the end of the article:

  • Cancer Research May Be More Affordable in the Cloud
  • IBM's Watson Trained to Suggest the Best Cancer Treatment

"The enemy with this cancer is so awful that it's bigger than any one of us," says Patricia Skarulis, vice president and CIO of Memorial Sloan Kettering Cancer Center, the nation's oldest and largest private cancer center. "People have committed their lives to conquering it. But it requires a lot of collaboration because the enemy is such a powerful one."

It also demands a lot of technology, whether it's next-generation DNA sequencing for the personalized cancer treatments of the future, or the latest in mobile, social media, cloud computing and analytics to increase the efficiency and efficacy of the country's leading cancer nonprofits.

The cancer-fighting CIO is a unique breed--fiercely committed to his or her work, yet open-hearted with comrades in the battle against the disease. And while each IT leader was drawn to the role for a different reason, they're all coming together to solve the technology problems that will enable the next innovative treatment, support service or research breakthrough.

A Higher Calling

Jay Ferro's wife Priscilla was diagnosed with cervical cancer in May 2005. She fought the advanced disease, which had not been diagnosed at her annual physicals, with chemotherapy, radiation and surgery. After a six-month remission, Priscilla's cancer returned. She died in January 2007, leaving Ferro and his three sons to wonder what might have happened had the disease been detected sooner.

Ferro, then the CIO of AIG, immediately set up a nonprofit--Priscilla's Promise--dedicated to increasing cervical cancer awareness and research. But it never occurred to him that he could use his IT leadership skills more directly in the cancer fight until an executive recruiter approached him about the CIO role at ACS.

"I'd assumed what most people assume--that a nonprofit is like a government institution. It's going to be behind the curve. It's going to be slow-moving," says Ferro. "But that couldn't have been further from the truth." He received a formal job offer from ACS on the five-year anniversary of Priscilla's death. "A match made in heaven," he says.

Como had cycled through numerous IT and product development roles over twenty years, spending time at Lockheed Martin, in dotcoms, and doing business-process outsourcing. After implementing his 14th child-support-processing system in his 14th state, he was burnt out.

"My mother used to say, 'Why do you work so hard?'" Como recalls. "'It's not like you're curing cancer.'" Since taking on the CIO role at LLS nine years ago, he's got an answer. "I'd always wanted to apply my skills to something that wasn't just about building shareholder value or reaping the most profits and then distributing those unevenly," he says. "I was looking for a way to give back based on my skill sets."

Machen worked for nine years in IT leadership at Hilton Worldwide, where he enjoyed the work and was being groomed for the top spot. But something gnawed at him. He'd spent his childhood summers doing mission work in Honduras. As an adult, he felt most fulfilled when he was volunteering during his off hours. When the CIO role opened up at ALSAC, it was an opportunity to combine his love of IT and helping others.

The three CIOs with strong commercial credentials each found their calling in cancer nonprofits. Today, they're dedicating their professional lives not just to their own organization's success, but to each others'. They started meeting annually last year.

"The end game is so similar that we thought, 'Why don't we share ideas,'" explains Ferro, who offered his colleagues the chance to sign NDAs but says no one has taken him up on it; they all agreed to share even nitty-gritty details. They talk desktop support, project management offices, data visualization and other CIO-related topics. They commiserate about office politics and the self-imposed pressure. Ferro shared his IT governance methods. Como explained his mobile peer-to-peer fundraising technology and offered to give it to the others. Machen introduced his approach to master data management.

"There are no sacred cows," says Ferro. "And you walk out the door feeling like you have CIO allies in the battle against cancer." And, says Como, "it's a lot cheaper than paying a psychiatrist."

A Radical ROI

While their day-to-day IT work doesn't look much different than what you'd see in any other IT organization, the returns, these CIOs say, are.

Machen is focused on three goals: creating a single view of the donor with a more robust donor-management system, improving donor engagement with mobile and social media tools, and delivering actionable insight through advanced analytics. Substitute the word "customer" for "donor" and it could be a to-do list for any Fortune 500 CIO. But Machen's real focus is the St. Jude patient. From his third-floor office, he has a clear view of the hospital. He eats lunch at the on-campus cafe, where he might share a table with a patient, a nurse, a janitor.

"You can't work here and be separate from the mission," Machen explains. "It's sacred ground. Parents come here clamoring for hope when they've been told there is none, and we receive them with open arms."

It takes $800 million to fund the institution, and most of that comes from donations of less than $30. ALSAC is processing about 17 million transactions a year. "Everything we do here is generated by those donors, and the enabler of all that is great technology," says Machen. When IT implements a new CRM system or rolls out smartphone check-in for the organization's 31,000 events, the return is better fundraising to support patient care.

Machen met a St. Jude patient's dad his first day on the job four years ago. He expected a sob story. Instead the man's eyes lit up, he raised his arms, and declared, "It's just too good to be true." He and his family were in their darkest hour, but when they got to St. Jude, they received world-class care for their daughter, subsidized meals and a place to stay as a family.

"My job is about providing something that's too good to be true," Machen says. "It drives me crazy when we don't. And we do miss the mark. But if 'too good to be true' is the goal, you get a lot closer to that than you would otherwise."

Ferro gets that. He's thinking about social, mobile, big data and cloud--like any CIO of his caliber. He's building a service-oriented architecture. He runs a 24/7 call center year-round. He handles the infrastructure and applications for the ACS's 800 locations, along with the Hope Lodges where cancer patients can stay during treatment. His IT underpins the largest nongovernmental source of funding for cancer research in the country.

Certainly Ferro measures his progress partly in the traditional way. By streamlining and standardizing IT systems, he's cut this year's budget 20 percent from last year while boosting customer service numbers. But those dollars and cents add up to something more. "We measure ourselves in lives saved," Ferro says.

For every IT decision he makes, he calculates how many donations it will cost. "Governance is a huge part of what we do," says Ferro. "Which initiative will generate the most income, which funds life-saving research and programs? Which will save the most money, which leaves more funds for life-saving research and programs?"

That metric creates a different feeling from the one Ferro had at previous jobs. "A cervical cancer researcher I know says there are three ways to look at what you do: Some people have a job, some people have a career, and some people are on a crusade," Ferro says. "We're on a crusade. And that's difficult to recreate if you're selling widgets."

At LLS, Como applied technology to help the organization better manage its portfolio of research efforts. As a result, LLS is now funding efforts in biotech and pharmaceutical companies in addition to academia. "It's all about the best science," he says. "And to heck with the rest."

He's testing analytics to improve revenue and field operations and exploring how the organization might analyze patient genomic information to figure out how to deliver the best outcomes. "We're dealing with a very complex set of diseases--over 145 blood cancer diseases that all react differently to different treatments," Como says.

Como, who also cut $5 million of annual cost by streamlining enterprise IT, laughs when people say nonprofits don't have a bottom-line orientation. "That's not true," he says. "The bottom line is even more in-your-face. Every dollar you don't spend goes to the mission."

Como was initially surprised by that added pressure, but it's just elevated the role of IT. "Our needs are plentiful, but our ability to meet those needs is limited," says Como. When a commercial enterprise needs more money, it sells investors on the promise of future return. At LLS and other cancer nonprofits, says Como, "we have to sell hope."

Fighting Cancer With IT

In the 19th century, the use of the microscope to study the pathology of disease led to the birth of modern oncology. CIOs working in the cancer field today say we're on the verge of a similar revolution. Two hundred years ago, "they realized there were things that couldn't be seen with the naked eye that could explain how the disease progressed," says Skarulis of Memorial Sloan Kettering. "It's that type of change we're experiencing today in terms of being able to see things we couldn't see before."

Next-generation DNA sequencing is the microscope of the 21st century. More streamlined and affordable technologies for studying the DNA of cancer cells are expected to speed up the development and implementation of improved--and personalized--cancer treatments. Next-generation sequencing methods are much faster than their traditional forebears, producing millions or billions of sequences at once. And the cost is plummeting. The Human Genome Project needed $3 billion and 13 years to sequence our DNA.

Today, researchers can sequence a genome in 10 days for $5,000. "In the next few years, you'll be able to get a full genome sequence of your DNA for $500," says Sorena Nadaf, associate director and CIO of the Helen Diller Family Comprehensive Cancer Center at the University of California, San Francisco (UCSF). "Pretty soon insurance will cover it like another blood draw."

In the near future, "every patient that comes in the door with a cancer diagnosis is going to get clinical-grade, next-gen sequencing," says Warren Kibbe, CIO of the National Cancer Institute (NCI) and director of the NCI Center for Biomedical Informatics and Information Technology. "In fact, it won't even be called next-gen sequencing soon."

That creates incredible IT demand. "It drives huge computational needs," says Kibbe. "It's exciting, but it's challenging because the environment can change overnight." Cloud computing holds promise, particularly for far-flung and smaller institutions. "There is a sea change in the way we operate as IT professionals," Kibbe says. "The ability to achieve true interoperability and utilize infrastructure- and platform-as-a-service in clinical research will revolutionize our ability to determine optimal treatments for new cancer patients."

When working with the scientific community, Kibbe is dealing with with evolving problems and new technologies to find solutions that weren't possible yesterday. Those research systems are as far from enterprise IT as you can get, intimately tied up in the particular research of an individual lab. But as the science matures, Kibbe must figure out how to make those one-off solutions scalable for the rest of the community.

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