Michael O`neil Was In The Hospital, Battling Cancer

Transcript

:) As seen in the January/February 2014 issue of A Patient with Connections Michael O’Neil was in the hospital, battling cancer and feeling cut off from the world. That’s when the Bethesda resident had his ‘aha’ moment. By Rita Rubin | Photography by Erick Gibson 242 January/February 2014 | Bethesda Magazine HEALTH © 2014 Bethesda Magazine. All rights reserved. As seen in the January/February 2014 issue of Bethesda Magazine “A lot of the soul of innovation comes from the most mundane experiences,” says Michael O’Neil, whose GetWellNetwork now serves 200 hospitals nationwide. © 2014 Bethesda Magazine. All rights reserved. Bethesda Magazine HEALTH | January/February 2014 243 As seen in the January/February 2014 issue of Bethesda Magazine a patient with connections As he lay in bed in one of the world’s top hospitals, surrounded by the latest in medical technology, newly diagnosed cancer patient Michael O’Neil couldn’t get over how low-tech his room’s television was. At 9 a.m. every day, “a kid would come in my room and ask for $7 to turn on the TV,” O’Neil recalls. The problem was, O’Neil had been told to leave his wallet at home. After he obtained the necessary cash, he wondered whether that television set was worth $7 a day. “When you turned it on, there were about nine staticky channels on it.” Worst of all was when he asked a nurse one morning for information about his chemotherapy for non-Hodgkin’s lymphoma. “Oh, we have an education channel,” she said brightly, directing him to the TV and yet another disappointment: Instead of information about chemotherapy, O’Neil found a breastfeeding video. 1998. At first, Georgetown’s student health center blamed his pain on bulging discs from playing intramural flag football or maybe “law school ulcers” brought on by stress. But “my pain over a number of months began to kind of move and spread,” O’Neil says. “I had terrible night sweats, often waking in a pool of sweat.” He sought answers at Georgetown University Medical Center. An endoscopy in April 1999 revealed a tumor the size of a tangerine in his stomach. “This could be stomach cancer, or it could be benign, but we need to find out quickly,” doctors told him. O’Neil underwent surgery to remove the tumor at Johns Hopkins Hospital in Baltimore. A week into what ended up being a nine-day hospital stay there, the pathology report on his tumor came back from the lab. The mass was neither stomach cancer nor benign. O’Neil had non-Hodgkin’s lymphoma, a cancer of the lymph tissue, which is found “I literally was drawing up the idea for this company while lying in my [hospital] bed,” O’Neil says. That’s when he came up with the idea for GetWellNetwork, a Bethesda-based company that provides interactive educational and entertainment resources through televisions in patients’ hospital rooms. “A lot of the soul of innovation comes from the most mundane experiences,” O’Neil says. O’Neil was 28 and a student in the joint law and business degree program at Georgetown University when his back started bothering him in the spring of throughout the body. The American Cancer Society estimates that about 70,000 Americans were diagnosed with the disease last year, and about 19,000 died from it. O’Neil’s main source of information about non-Hodgkin’s lymphoma and its treatment came from the printouts that his fiancée, Wendy—a “104-pound Armenian firestorm,” as he describes her—would bring from her office in Tysons Corner in Virginia. “When you’re back in your real world—at home, at school, at work— 244 January/February 2014 | Bethesda Magazine HEALTH you have access to all this amazing technology,” O’Neil says. But in the hospital, “when you have to make all these critical decisions, you happen to have the least.” He felt uninformed, out of control, helpless. And scared. But he also felt inspired. “I literally was drawing up the idea for this company while lying in my [hospital] bed,” O’Neil says. After surgeons removed the tumor, O’Neil underwent four rounds of aggressive chemotherapy over the spring and summer. He’d then go to his fiancée’s Georgetown apartment (with three roommates, his was too noisy), eat a plain Domino’s pizza and then sleep for 14 hours. To this day, O’Neil thinks Domino’s pizza smells like chemo. After his first round of chemotherapy, his parents held an engagement party for him and Wendy. His hair was starting to fall out, so the day after the party he shaved his entire head. He returned to grad school in September 1999, bald and 10 pounds lighter, but passionate about his plan for a company that would prevent patients from feeling as powerless as he had in the hospital. “My professors were phenomenally supportive,” O’Neil says. “While back in school, I was doing research and writing the business plan, leveraging many of my law and MBA classes.” He incorporated GetWellNetwork in August 2000, nearly two years before he would graduate from Georgetown. He sketched out his ideas on a whiteboard, and then the two software engineers he hired translated them into code. In search of clients, “we went to…local hospitals and some hospitals up in New England,” O’Neil says. GetWellNetwork’s premise was that engaging patients in their own care would make them more motivated to get better and stay that way. When patients are engaged in their own care, hospitals see patient care improve and the cost of © 2014 Bethesda Magazine. All rights reserved. As seen in the January/February 2014 issue of Bethesda Magazine Calla, Wendy, Ava and Michael O’Neil enjoy a moment together at their Bethesda home. providing that care decline, according to GetWellNetwork, which provides hospitals with the tools to measure progress. By 2003, the company had 20 employees and a handful of client hospitals. As his business was taking off, O’Neil and his wife faced another “lifedefining moment,” as he calls it—the devastating loss of one of their infant twin daughters. Before Macey and Ava were born in 2005, doctors detected on a sonogram what they thought was a congenital cystic adenomatoid malformation (CCAM), an overgrowth of abnormal lung tissue, in Macey. In most cases, a baby with CCAM does fine. But at birth, “Macey was not breathing,” O’Neil recalls. “She was rather blue. Of course, they took her away right away. About an hour later, the pediatric surgeon came in. [He said] ‘Macey is very sick.’ ” Macey did not have CCAM. She had a birth defect called a diaphragmatic hernia, which occurs in as many as one in 2,200 live births. Her intestines, stomach and other abdominal organs had pushed through a hole in her diaphragm and into her chest, preventing her heart and lungs from growing normally. She would need to have surgery to push her organs back in place and repair the hernia. Macey was airlifted from Inova Fairfax Hospital, where she was born, to Children’s National Medical Center in Washington, D.C., for the operation. But she was never well enough to undergo surgery, and she died 19 days after birth. Despite what he had learned as a cancer patient and in creating his company, “I still felt like I was on the outside looking in,” O’Neil says of the experience. It made him realize “how important the family is in our health journey. The patients are often so helpless during this period of time.” GetWellNetwork had begun to work with Children’s by the time Macey was a patient, but it was not yet available in the neonatal intensive care unit (NICU). O’Neil’s experience as the father of a patient “woke us up to really expanding the company’s focus,” he says. “It should be family- and patient-centered care, not just patient-centered care.” Even if their loved ones are too young or too sick to interact with GetWellNetwork, the caregivers can. Today, he says, the network is available in Children’s NICU. O’Neil’s insight has helped GetWellNetwork flourish. By 2009, it was recognized by Deloitte as one of the 500 fastest growing technology, media, telecommunications, life sciences and clean technology companies in North America. Today © 2014 Bethesda Magazine. All rights reserved. Bethesda Magazine HEALTH | January/February 2014 245 As seen in the January/February 2014 issue of Bethesda Magazine a patient with connections Last year, O’Neil says about 2 million patients interacted with GetWellNetwork. it employs about 230 people, including about 50 software engineers. It serves 200 hospitals around the country—26 children’s hospitals and 25 Veterans Affairs and military hospitals among them— covering 40,000 to 50,000 beds. In September, GetWellNetwork moved from Norfolk Avenue into larger headquarters on Old Georgetown Road. At 42 and healthy, O’Neil is the company’s CEO. Originally from New York, he lives with Wendy, 46, and daughters Calla, 10, and Ava, 8, in Bethesda. His sister, Shannon O’Neil, who lives two blocks from him and his family, serves the company as vice president, user experience. She’s responsible for figuring out how the software should look, feel and behave for the people who use it. Last year, O’Neil says about 2 million patients interacted with GetWellNetwork. Some hospital rooms have new touch-screen monitors at the bedside, while others have kept their old wallmounted televisions, which have been modified with a new remote and keyboard to work with the network. Besides watching cable channels or on-demand movies, patients can access test results and post questions for and get answers from doctors on the network’s interactive whiteboard. Instead of buzzing the nurse, they can contact dietary services directly if a meal isn’t satisfactory, or housekeeping if their bathroom needs to be cleaned. “We’re doing a lot of streamlining of clinical and nonclinical functions,” O’Neil says. That frees up nurses to focus on patient care. Nurses and doctors can select appropriate educational videos for patients that cover a wide range of conditions, medications, tests and treatments. “We’re working alongside doctors and nurses all the time,” he says. G e t Wel l Ne t work’s “O utc ome s Achievement Plan Dashboard” enables hospitals to track improvements seen as a result of implementing the system. For example, O’Neil says, at Florida Hospital Celebration Health, in Celebration, Fla., GetWellNetwork helped cut the percentage of heart failure patients who had to be readmitted within 30 days of discharge from about 16 percent to 8 percent. At Inova Fair Oaks Hospital in Fairfax, Va., he says, the percentage of patients dissatisfied with the noise level at night dropped from 50 percent in 2012 to 40 percent this past year. And, O’Neil says, patients are leaving Sharp Memorial Hospital in San Diego a little bit sooner, as the average length of stay has fallen from 5.2 days to 4.9 days. Last March, GetWellNetwork launched in Georgetown University Hospital, the closest client to the company’s headquarters. For now, GetWellNetwork is only in Georgetown’s pediatrics unit. “I really thought it would make a huge difference with our patients,” says Georgetown child life specialist Linda Kim, who learned about GetWellNetwork at a conference. “The entertainment aspect of it alone sold me, but then I found out it could do so much more.” “GetWellTown,” the pediatric version of GetWellNetwork, is particularly kid- 246 January/February 2014 | Bethesda Magazine HEALTH friendly, Kim says. “The kids actually figure it out faster than the adults. They get to go online. They can check their emails, keep in touch with their teachers.” And they can watch movies, listen to music, create art and play games. Parental controls can be used to block sites such as Facebook, she says. “It’s definitely awesome,” 16-yearold Grace Mitchell says from her bed at Georgetown. Grace, who lives on Capitol Hill, was diagnosed with a rare autoimmune disorder in 2007. She’s one of 3,000 to 5,000 Americans with juvenile dermatomyositis (JDM), which causes skin rashes and muscle inflammation but is treatable. Grace spends a weekend at Georgetown every month to receive intravenous immunoglobulin, and she loves being able to watch movies and tune in to hulu.com on GetWellTown to catch up on episodes of Project Runway and Modern Family. She uses her own laptop to do homework, but she likes to surf the Internet on GetWellTown, which is faster than the hospital’s Wi-Fi. In the children’s hospitals where GetWellTown has been implemented, virtually every patient watches movies or plays games on it, O’Neil says. Before they can access the fun stuff, though, they must do their homework—which means watching the educational videos that their doctors or nurses have recommended. “They gain so much strength by staying active and being engaged in their care,” O’Neil says. And they frequently become a source of strength for their families. © 2014 Bethesda Magazine. All rights reserved. As seen in the January/February 2014 issue of Bethesda Magazine At the Birmingham VA Medical Center in Alabama, where GetWellNetwork went live in 2011, most of the patients are over 60, and “we’ve seen a lot of benefits,” says Jeff Hester, director of public affairs. Educational videos teach patients and their families about procedures they must undergo and the diet they’ll have to follow at home. They press the nurse call button less often and instead turn to GetWellNetwork to contact housekeeping about cleaning their room. Hospital executives no longer wonder “is this just a big entertainment system?” as they did when they first heard about GetWellNetwork, Hester says. In August, the Birmingham hospital integrated its electronic medical records system with GetWellNetwork. Now, when patients watch an educational video selected by a nurse or doctor, GetWellNetwork automatically notes that in the medical record. Previously, Hester says, nurses had to document it by hand. At GetWellNetwork client hospitals, patients and their families can access discharge instructions on the system, so the logical next step for O’Neil’s company was myGetWellNetwork, which delivers personalized information to patients outside the hospital via secure Internet access anywhere they can open a browser window. Throug h myG etWel lNet work, patients use their home computers, tablets and smartphones to track their progress in a personal health journal, watch educational videos and receive daily tips and reminders to help them manage chronic conditions. MyGetWellNetwork is available through a growing number of doctors’ offices, O’Neil says. “We call it ‘get well anywhere.’ ” n A Dental Experience Like No Other We offer a variety of dental solutions for those people who experience fear, anxiety, or simply have a busy schedule. Our uniquely skilled dentists are hospital trained in sedation dentistry so you will be in safe hands as you drift off into a relaxed sleepy state and wake up when it’s all over! Sedation dentistry enables us to comfortably accomplish more care in each visit. We promise our gentle care and genuine concern will make you smile! We are here for you when you are ready to take the first step in your dental transformation. Just schedule an appointment online or call Bethesda Sedation Dentistry at 301.530.2434. Dr. Deb Klotz, Dr. Rob Schlossberg and the team at Bethesda Sedation Dentistry are looking forward to meeting you. Please check out our new website BethesdaSedationDentistry.com and see why we were voted one of the Best Dentists by the readers of Bethesda Magazine. A former medical writer for USA Today, Rita Rubin lives in Bethesda and frequently writes for the magazine. To comment on this story, email comments@ bethesdamagazine.com. © 2014 Bethesda Magazine. All rights reserved. Bethesda Magazine HEALTH | January/February 2014 247