By Chris Fleisher
‘She's Always Been a Fighter'
Valley News Staff Writer
Charlestown -- All that Hillary St. Pierre-Ford wanted was a second opinion.
It was December 2006 and just nine months prior, at the age of 23, she had been diagnosed with Hodgkin's Lymphoma.
An emergency room nurse by profession, St. Pierre-Ford educated herself about the disease and discussed treatment options with her doctors at Dartmouth-Hitchcock Medical Center. Still, she wanted to hear another opinion. Memorial Sloan-Kettering Cancer Center was her choice. Her doctors went about setting up an appointment. It would take six weeks, she was told.
“As aggressive as her cancer was, she didn't have six weeks,” said Nancy St. Pierre, her mother.
Having been on the other side of health care, St. Pierre-Ford knew how the system worked. But she could not believe that in a digital era when patient information could be transmitted instantaneously, that a dying person would have to wait six weeks before they could even be seen at another hospital.
In fact, she didn't have to wait that long. St. Pierre-Ford used her technological savvy and her knowledge of the health care system to get her record sent to Sloan-Kettering. She got an opinion back two days later.
The doctors at Sloan-Kettering told her pretty much the same thing she heard at DHMC. Yet, the experience proved to be a revelation about how the current health care system was failing patients. She decided then that there had to be a faster, more efficient way to provide care.
“It was clear that people who did not have the network she had, or the knowledge she had, or the chutzpah she had, were dying,” St. Pierre said.
Last month, St. Pierre-Ford died at the age of 29. But until the moment that cancer claimed her life, she was determined not to let her experience as a patient go to waste. She turned her frustration into action, advocating for reform at the federal and state levels, writing about her experience on her blog and the news website Huffington Post, and becoming a voice for patients who she felt were being neglected by the system.
Once an aspiring communications major at the College of New Rochelle in New York, St. Pierre-Ford used her writing and technology skills to raise awareness of problems within the health care system and also suggest ways to solve them. Her legacy could be an electronic health record system, called “Patients as Partners,” that acts as a kind of “Facebook” for health care, where multiple providers from different hospitals can communicate in one place about a single patient.
She designed the project from her bed, then patented it and gave it to the state of New Hampshire, which is now considering it as part of a larger effort to create an electronic medical records exchange program.
Those people who came to know St. Pierre-Ford after her diagnosis in April 2006 were impressed by the scope of her accomplishments in such a brief and difficult period at the end of her life. But her closest friends and family -- the people who knew her before she was a patient -- were well aware of what she was capable of.
“When Hillary was born, we almost lost her,” said John West, the retired Claremont physician who delivered Hillary, and her twin sister, Heather. “She wasn't breathing, her heart beat was slow… From then on, she's always been a fighter.”
A Call to Nursing
A smart and ambitious small-town girl from Charlestown, St. Pierre-Ford set her sights high after graduating from Fall Mountain Regional High School in 2001.
She wanted to be in New York City and decided to attend a college just north of there in New Rochelle, N.Y.
St. Pierre-Ford was a talented writer and had plans to become a communications major. But during her freshman year, in September 2001, she had a change of heart.
The Sept. 11 attacks created a critical and immediate need for health care workers to treat injured victims. Bearing witness to that became her calling to be a nurse.
“She decided throughout that first semester that it didn't make sense to stay in communications when she could do more in nursing,” said Victor St. Pierre, her father.
St. Pierre-Ford entered the nursing program at New Rochelle the following semester and immediately developed a passion for the work. Never one to shy from a challenge, she craved the intensity of the emergency room and worked as a nurse's aid in rough parts of the city, including a hospital ER in the Bronx.
“I remember when she had her first gunshot victim,” said Nancy St. Pierre. “She called me and was so excited.”
St. Pierre-Ford found working in Harlem and in the Bronx to be exhilarating and fulfilling. Meanwhile, she excelled in her classes and was on her way to graduating with honors. Then, just before her junior year began, St. Pierre-Ford learned that she was pregnant.
She gave birth to her son, Xander, over spring break of that year. It would change everything, Victor St. Pierre said, ultimately convincing her to return to Charlestown to raise her child.
“She originally wanted to stay in New York, get away from this little town and spread her wings,” Victor St. Pierre said. “But Xander made things different.”
After graduating Summa Cum Laude in 2004, Hillary St. Pierre-Ford returned home to raise a child and begin her career. She married Xander's father, Jon, that September and was hired at Valley Regional Hospital as a nurse in the emergency department.
Frank Schell, who was an internist at Valley Regional, said he was immediately impressed.
“She was truly a remarkable nurse,” he said. “She was always a go-to person.”
Over the next year and a half, St. Pierre-Ford's career took off. She decided to pursue studies to become a nurse practitioner. (West felt she should be a doctor.) Then, on April 5, 2006, all those plans took a back seat.
“She had just signed up for that (nurse practitioner) program when all of a sudden, this damn lump occurred in her neck,” West said.
West drove with her to DHMC on the day of her diagnosis. It was Hodgkin's Lymphoma, a disease in which “95 percent of the cases are curable,” West said.
Afterwards, they went to eat at Three Tomatoes Trattoria in Lebanon and talked. She was concerned, but resolved not to let it control her life.
“Hillary really wanted to live for a number of things,” West said. “Primarily, Xander, but she felt she had a lot to do. And she did it.”
Struggles Within the System
St. Pierre Ford began seeking treatment for her cancer at DHMC. But it was not the only place she would get care.
She would consult with doctors at Dana Farber Cancer Institute in Boston and New York-Presbyterian at Columbia University in New York City. She also sought guidance of colleagues such as Schell.
Early on, everyone was optimistic, Schell said.
“She had what should have been a highly curable disease,” said Schell, who is now an oncologist at DHMC. “And she had an ace in the hole, which was her twin sister.”
In early 2007, St. Pierre-Ford underwent a bone marrow transplant with her sister, Heather, as the donor. Unfortunately, it did not take, and she had another transplant, this time from a European donor, the following year.
The cancer kept coming back -- 13 times in all. At one point, she learned about a clinical trial for an experimental cancer drug at Dana Farber. She wanted to be a part of it.
But coordination between DHMC and Dana Farber proved to be difficult.
“She was in a no-man's land for six weeks,” said Victor St. Pierre. “Both thought the other was treating her.”
“It was hard to get the records, not out of DHMC, but just get them coordinated,” West said. “It was like (Dana Farber and DHMC) weren't quite connecting with each other.”
Schell wasn't part of her care team, but he offered to make some calls for her. Eventually, the situation was ironed out.
Although uncommon, patients can manage many aspects of their own care, Schell said. But not many people have the knowledge or will to do so.
“Patients rarely feel empowered, because they don't understand the system,” he said. “They don't know how it works.”
Federal privacy laws under the Health Insurance Portability and Accountability Act can become an enormous obstacle for physicians who need to share patient information. Such laws are well intentioned, as they seek to protect patient privacy, Schell said. But they can also create bureaucracy that hinders quick access to care.
“The problem is that it's very complex and as much as the data transfer needs to be efficient, you have to guard against dissemination of information beyond the scope of where the patient wants it,” he said. “But once the decision is made, it should happen at the speed of light.”
There were other concerns. She wrote on her blog, called “Baldie's Blog,” and for other Web publications about the immense costs to her family, how insurance maximums would cut off life-prolonging treatments. Last year, she wrote for the Huffington Post about how health care costs were forcing her to consider a “Medicaid divorce,” in which she would legally divorce her husband to protect his financial assets and, in becoming single and destitute, make herself eligible for Medicaid to pay for care. (She and Jon did not divorce.) Private insurance, she found, would not cover many treatments.
Relying on digital media to spread her message, St. Pierre-Ford wondered why her doctors couldn't use the same technology to better coordinate her care. That's when she started a project.
“She felt, there has got to be a better way and a faster way and a more efficient way of having treatment than this,” said Nancy St. Pierre. “That's when Patients as Partners was started.”
Patients as Partners
Her concept was an electronic health record system, in which patients would have control of their own information while allowing health care providers access.
By allowing patients to control what information was available in an online network, they might be able to get around restrictive privacy laws because the patient would have consented to releasing that information. That way, any physician who was caring for that patient would have access to the records instantaneously, and whenever they needed.
St. Pierre-Ford patented the system and gave it to the state of New Hampshire to consider as it develops its own electronic medical records exchange program, a part of federal health reform.
State Sen. Bob Odell, R-Lempster, has been appointed to the board of the New Hampshire Health Information Organization, which is overseeing the rollout of that program.
Odell first met St. Pierre-Ford in 2007 during a public hearing about the state budget at River Valley Community College in Claremont. She was an “impassioned” speaker, he recalled, and very convincing about the need to continue funding for various health care-related programs.
The following year, Odell's wife was diagnosed with cancer.
“When Hillary found out about that, she contacted me to ask how I was doing,” Odell said in an interview last week. “Our relationship went from being about public policy issues to become very personal.”
That personal relationship with St. Pierre-Ford, and hearing her frustrations, also deepened his understanding of the need for better communication between providers.
“We think about health records as being the future and located in one hospital,” he said. “But what happens when you're moving around the country? We don't have a system to do that.”
Most hospitals in the Upper Valley, and indeed throughout the nation, are implementing electronic health records systems in order to streamline care. Legislation passed in 2009 as part of the stimulus bill authorized federal incentives -- through Medicare and Medicaid -- to health care providers that put in place comprehensive electronic systems by 2014. But not all of these systems are compatible with one another, and there have been concerns raised about transferring patient data between institutions.
Hospital officials, including those at DHMC, have said they are aware of the challenges in getting the various software platforms to “talk” with each other.
The man who is leading DHMC's conversion to electronic records, Andrew Gettinger, said the hospital continues to make strides in improving electronic communication with other health care providers. He had concerns with a system that would allow patients to be selective about which information was shared -- they might suppress crucial information that a doctor would need to know.
Generally, however, there is a great need to be able to share patient records electronically through a health information exchange, he said.
“I am completely supportive of that. I think that's an important thing,” said Gettinger, who is medical director of information systems and informatics at DHMC. “I quite frankly would love to have more enthusiasm for it and quite frankly funding for it, both at the federal level and at the state level.”
Schell thought it would be nice if St. Pierre-Ford's idea could play a role in developing New Hampshire's exchange.
“If that is a success, it would be a truly fitting legacy for her,” he said.
St. Pierre-Ford was, indeed, frustrated with many aspects of the health care system but held great hope for federal reform efforts, even if she did not live long enough to benefit from them, said her friends and family.
The urgency St. Pierre-Ford felt for reform wasn't to save only herself, said Nancy St. Pierre. She was fortunate to know the system well enough to be her own advocate, which led to better care. In some respects, St. Pierre-Ford actually enjoyed a position of privilege.
And that disparity in the care patients received, Nancy St. Pierre said, is what drove her daughter to fight.
“She felt that just because you don't have the knowledge, or just because you don't have the self-esteem,” she said, “shouldn't be a reason why you don’t survive your disease.”
Chris Fleisher can be reached at 603-727-3229 or firstname.lastname@example.org.