USF Health clinical and molecular geneticist Rebecca Sutphen, MD, has survived breast cancer and melanoma.

Genetic testing has been available since the mid-1990s to determine if a woman is likely to face one of her gender’s greatest fears: inherited breast and ovarian cancer. Yet, questions remain about whether common tests for the genes BRCA1 and BRCA2, which identify mutations that significantly increase a woman’s risk of breast and ovarian cancers, are reaching those who can most benefit and how the information learned from the testing is put to use.

USF Health medical and molecular geneticist Rebecca Sutphen, MD, a breast cancer and melanoma survivor, has broad expertise in genetic conditions affecting both adults and children. She has devoted much of her recent career working with Facing Our Risk of Cancer Empowered (FORCE), the leading national nonprofit advocacy organization for hereditary breast and ovarian cancer, to seek answers that will improve health outcomes of women at high risk for these cancers.

Dr. Sutphen’s research is guided in part by her own experiences as a patient, as well as Big Data’s emerging power to integrate electronic medical information and help build evidence about the effectiveness of clinical care. She emphasizes the need to ensure that patients help shape the investigative process.  In addition to her academic work, she is the chief medical officer of InformedDNA, a national genetic services organization.

The National Cancer Institute estimates only 3 percent of adults with cancer participate in clinical trials, with members of racial and ethnic minorities and low-income individuals particularly underrepresented.

“If research started with the questions that patients want answered, it seems likely there would be more participation in clinical studies, and it would be more obvious to patients how the research is relevant to them,” said Dr. Sutphen, professor of genetics at the USF Health Morsani College of Medicine’s Health Informatics Institute.

Cancer studies still largely focus on determining what treatments contribute to longer life, she said.

“Obviously survival is very important, but patients with cancer often have several options for treatment. What we learn from patients is that they also care about maintaining quality of life – things like the ability to get in their cars and continue to go to the grocery store, or to sleep at night… So, how can we better tailor the treatment options available to match each individual’s preferences?”

 Dr. Sutphen discusses the powerful potential of Big Data.

Dr. Sutphen works out of the Morsani College of Medicine’s Health Informatics Institute led by Jeffrey Krischer, PhD. She is pictured here with clinical research associate Beth Ann Clark, right.

USF helps lead way in BRCA testing and counseling

Dr. Sutphen, proficient in sign language, has a brother and sister who were both born deaf. She says her interest in genetics was sparked as a medical student when she accompanied her sister and her sister’s husband to Johns Hopkins medical genetics clinic for an evaluation of her 2-month-old nephew, also born deaf.

What the family learned about genetics and the probabilities of inheriting certain conditions was informative and fascinating, Dr. Sutphen said. “I saw genetics emerging as a new, growing area of science with the opportunity to impact the lives of people who really need information and can use it in a proactive way to make better decisions for themselves and their families.”

After earning an MD degree from Temple University School of Medicine, she completed a pediatrics residency at All Children’s Hospital in St. Petersburg and a fellowship in human genetics at USF. She is certified by the American Board of Medical Genetics in both clinical and molecular genetics.

In 1995 Dr. Sutphen joined the USF College of Medicine as a faculty member and shortly thereafter became the director of clinical genetics at All Children’s Hospital and at Moffitt Cancer Center.   As BRCA testing became commercially available, she helped USF establish one of the first programs in the state to offer clinical genetic testing and counseling for cancer.

For the first time, a test could identify if a person had inherited a defect in BRCA1 or BRCA2, and therefore tell who was at greater susceptibility for developing breast and ovarian cancer. Also, even if a woman with the inherited mutation never developed cancer herself, she would know she had a 50 percent chance of passing down the mutation, and increased risk, to any offspring.

But many more questions could not be answered. Was the risk the same for everyone who inherited a mutation? Was there a certain age the cancer would be likely to emerge? Could anything modify the risk? Will intensive screening (mammograms, MRIs, ultrasounds) catch a cancer early enough? Should a woman have her breasts or ovaries removed?

“While there was great excitement about the clinical availability of this new testing, there was a huge gap in what we could tell people about their own particular situation and what to do about it,” Dr. Sutphen said.

 Dr. Sutphen comments on engaging patients in the research process.

In the 1990s, Dr. Sutphen helped USF establish one of the first programs in the state to offer clinical genetic testing and counseling for hereditary breast and ovarian cancer.

Meeting begins enduring research collaboration, friendship

Dr. Sutphen began working with Distinguished University Health Professor Jeffrey Krischer, PhD, now director of the Health Informatics Institute, to develop NIH project proposals that would meaningfully address some of these unanswered questions. And in 2004, Dr. Sutphen invited Dr. Sue Friedman, founder and executive director of FORCE, to meet with the USF team to discuss how to best integrate “the patient voice and community” into the group’s hereditary cancer research.

After that initial meeting and learning about USF’s advanced health informatics capabilities, Dr. Friedman said, she quickly drafted a proposal to move her fledging nonprofit organization and family from South Florida to Tampa to work more closely with the USF team.

“When we first started looking at what a collaboration for hereditary breast and ovarian cancer research would look like, we included things like a yearly conference, a patient registry, research grants, writing a book. And, while there have been challenges along the way, in the last 12 years we’ve accomplished a lot of what we dreamed about and continue to build upon it,” Dr. Friedman said. “Aligning with USF has enhanced our organization’s ability to deliver meaningful research to the community, not just in terms of recruiting patients and reporting study results, but to actually help drive the research at every level.”

Along the way, Dr. Friedman, also a breast cancer survivor, and Dr. Sutphen became best friends as well research partners. “Rebecca has been visionary in recognizing the value of including health plan data in the research, and extraordinarily open to bringing in patients as equal stakeholders.”

Sue Friedman (left), founder and executive director of Facing Our Risk of Cancer Empowered, or FORCE, and USF’s Dr. Sutphen have worked together for the last 12 years. They have become friends who share a commitment to making patients equal stakeholders in driving hereditary cancer research.

 Inherited breast and ovarian cancer community’s influence on personalized medicine.

Research and advocacy join forces

Combining their complementary expertise in research and advocacy, USF Health and FORCE have attracted several highly competitive grants. Currently, Dr. Sutphen is the lead investigator for two national research awards focused on hereditary breast and ovarian cancer research.

• Impact of BRCA Testing on Newly Diagnosed U.S. Breast Cancer Patients. This landmark study, supported by a $2.8-million NIH RO1 award, is conducted in collaboration with the commercial health insurance plan Aetna. Researchers previously examined de-identified data on thousands of Aetna members across the country who received BRCA testing and surveyed them about factors associated with the use of this testing including genetic counseling services. Now, analyzing de-identified health claims information, Dr. Sutphen and colleagues will track the outcomes of consenting patients with increased risk for breast and ovarian cancer syndrome — including what types of health care professionals the women saw and how the positive genetic test results affected their decisions about managing cancer risk (including preventive treatment options), which patients subsequently were diagnosed with cancer and their medical treatment choices.

“To date,” Dr. Sutphen said, “there has been no similar study evaluating the health outcomes of a national sample of women undergoing BRCA testing in community settings.”

• Patient-Powered Research Networks, American BRCA Outcomes and Utilization of Testing Network (ABOUT Network). The project, totaling $2.4-million in support from the Patient Centered Outcomes Research Institute (PCORI) for Phases I and II, continues the work led by USF and FORCE to advance a national patient-centered research network of individuals with hereditary breast and ovarian cancer. The ABOUT Network was created to identify this patient community’s unmet needs, promote their governance in research and focus on the questions and outcomes that matter most to patients and their caregivers. USF’s ABOUT patient-powered research network is one of 20 nationwide participating in PCORI’s initiative to help individuals access their electronic health records data through existing patient portals and share it for research that could improve care for their conditions.

“We are establishing mechanisms to allow any patient in the U.S. who has hereditary breast and ovarian cancer to participate in studies relevant to them,” Dr. Sutphen said. “Harnessing the power of Big Data with guidance from patients enables a scale of research never before possible.”

Some early findings have begun to be disseminated. In a study published last year in JAMA Oncology, which attracted national media attention, Dr. Sutphen and co-authors found that most women who underwent BRCA testing did not receive genetic counseling by trained genetics professionals — and lack of physician recommendation was the most commonly reported reason. Yet, those who did get this clinical service before testing were more knowledgeable about BRCA and reported more understanding and satisfaction than women who did not.

This demonstrates gaps in services to be addressed, Dr. Sutphen said, because consultation with a trained genetics clinician is widely available (by phone or in person) and now covered as a preventive health service by most insurers with no out-of-pocket costs to patients.

 Dr. Sutphen talks about her breast cancer diagnosis.

Researcher confronts breast cancer as patient

Dr. Sutphen was diagnosed with breast cancer in 2008, following a routine mammogram. She was premenopausal and had no family history of cancer.   The radiologist who read her mammogram, a colleague, pulled her out of clinic at the Moffitt Lifetime Cancer Screening Center to alert her to the abnormality on her X-ray. The biopsy confirmed early-stage breast cancer.

“I was shocked,” she said. “I remember the part of the conversation ‘you have cancer,” seeing the doctor’s mouth moving and then not hearing any words after that.”

She called her best friend Sue Friedman, herself a breast cancer survivor, for support and after careful consideration of her treatment options decided to undergo a bilateral mastectomy with reconstruction.   The choice worked well for her, Dr. Sutphen said, but another friend with the same type of breast cancer chose lumpectomy instead.

“The first thing to look at is whether the likelihood for a recurrence of the cancer is the same if you have a lumpectomy or a mastectomy – and if the answer is yes, then beyond that it’s a matter of personal preference,” Dr. Sutphen said. “So, two people can make very different choices, but the right choice for each of them.”

In 2013, after having a “mole that looked different” on her arm checked out, Dr. Sutphen was diagnosed and treated for melanoma.

Her own experiences as a two-time cancer survivor have added perspective to her research, Dr. Sutphen said. “It really emphasized to me just what it’s like to be a patient, how difficult the decisions are to make, and how challenging your emotional state becomes.”

To make the often confusing and complex journey a little easier for patients and their families, Dr. Friedman and Dr. Sutphen collaborated with freelance writer Kathy Steligo on a book titled Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny. They wanted to integrate into one book the latest evidence-based information to help women with cancer-susceptibility genes maximize their long-term survival and quality of life.

“The book was published in 2012, but it’s still 95 percent relevant today,” she said.

Dr. Sutphen with her daughter Serenity, 11.

Something you may not know about Dr. Sutphen

Dr. Sutphen was named one of the top 10 cancer medical geneticists in the United States in Newsweek’s “Top Cancer Doctors 2015” list. In 2012, she was selected by TEDMED to be the advocate leading its “Shaping the Future of Personalized Medicine” program, part of the Top 20 Great Challenges annual conference.

For many years she enjoyed the scenic adventure of flying paraplanes, or powered parachutes, ultralight aircraft with a motor, wheels and a parachute. But these days Dr. Sutphen prefers remaining on the ground to cheer on daughter Serenity, 11, a horseback rider who competes in barrel racing.

Photos by Eric Younghans, and audioclips by Sandra C. Roa, USF Health Communications

USF Health converted to Epic electronic health records (EHR) system at all its clinical sites Aug. 1, launching a new era of efficiency, improved patient care and safety, and a more cohesive system with Tampa General Hospital, its primary teaching hospital.

It may have set a record for one of the fastest transitions; typical changeovers take more than 18 months; USF Health did it in seven.

One week in since the Aug 1 Go-Live launch and many areas are already ramping up to refill schedules for patient appointments, which had been reduced to allow for fewer complications, said Patrick Gall, senior director of USF Health Applications and the technology lead for the USF Health Epic implementation project.

The USF Health transitioned to the Epic electronic health records system in seven months; the typical changeover takes more than 18 months.

The Aug. 1 Go-Live launch was set purposefully on Saturday– when only a few clinical areas see a few patients – so the true test came Monday, Aug. 3, when all clinical areas began seeing patients. On Monday, Aug. 3, the day began with an initial hiccup related to access security, an anticipated problem with most Epic launches so USF Health Information Systems was prepared and quickly remedied the issue, Gall said. There were a few other issues across the day, but mostly clinics ran smoothly, Gall said. In all, the Command Center – a room filled with dozens of support staff specially trained for Epic – took 581 calls Monday and by Wednesday calls were down to 315.

The transition continues for another couple of weeks, Gall said, and by the end of August, the Go-Live portion of the project will be complete. By then, two and half years’ worth of clinical data will have been transferred into Epic.

Next steps, he said, include customizing the system to each departments’ needs (starting Sept. 1) and the implementation of ICD-10 (starting Oct. 1), the international medical coding system. In January, all USF Health clinical sites and departments will receive consultation on workflow optimization within Epic to be more efficient with inputting patient data.

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Some highlights of the USF Health Epic implementation and of the first week for Go-Live include:

* Executed in 7 months (average is 18 months)

* Rolled out electronic charge capture (a first for USF Health providers, who formerly used paper)

* Ensuring ICD-10 compliance

* Became the largest ever “practice connect” Epic deployment

* Trained more than 1,700 users in a 6-week timeframe

* Partnered with TGH’s Epic system while creating a support model where USF Health can support its own users

* Built ~160 Epic Departments (four times the amount TGH had in their Epic environments prior to USF Health)

* Deployed and tested over 1,100 end point computing devices before Go Live

* Manually migrated over 60,000 appointments in one weekend

* Ensured the EHR interfaces effectively with GE Billing and all ancillary systems (ASC, Radiology, etc.)

* Trained entire EHR support team on a new technology while building it

* Developed and deployed a super user program with over 100 super users and over 40 provider champions

* Migrated all patient data from the last 2.5 years into Epic and connected to TGH records

* Deployed Kaleidoscope-specific system for Ophthalmology within the same timeframe

Hundreds of people from various departments have been involved in the project including: USF Health Administration, USF Health Information Systems, Revenue Cycle, Clinical Operations, Patient Access, provider champions, TGH Administration, TGH analysts, Epic consultant analysts, consultant trainers, consultant support, USF System Information Technology and USF Health Communications.

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Photos by Sandra Roa, USF Health Communications and Marketing

This story is part of a series highlighting faculty who are shining examples of quality and compassionate patient care and patient safety. Every day, these health care providers put their patients first. In the process, they create successful models of advanced care focused on empathy, safety, technology and evidenced-based medicine, models that carry through everything they do – into their practice, their teaching, their research, their community outreach, and into the USF Physicians Group.

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Karen Bruder, MD, FACOG, was straight out of her medical residency when she saw firsthand the impact data could have on improving patient safety. As an invited member of the patient safety committee at American Congress of Obstetricians and Gynecologists (ACOG), Dr. Bruder was privy to national trends for problems and part of the effort to implement change for improvement.

Today, she is extending that reach directly into the patient care settings at USF Health. As Executive Physician Champion for USF Health’s transition into the Epic electronic health records (EHR) system, Dr. Bruder is the lead for guiding every health care provider at USF Health into the new EHR system.

Dr. Karen Bruder

To understand the true impact of that role, you might first know that Epic is a national leader in EHR and the same system used by Tampa General Hospital, the primary teaching hospital for the USF Health Morsani College of Medicine. This transition means patients will no longer need to collect and transport their records as they go from one partner institution to the other.

But more than that, Epic will help USF’s health care teams see up-to-the-minute records of patients at both institutions. It’s that real-time data – giving as complete a picture as possible of every patient – that is Dr. Bruder’s true target because that component directly correlates to patient safety.

“There’s one great benefit with Epic to patients, which they may or may not realize, and that is a reduction of medical error,” Dr. Bruder said. “A great deal of errors happen when information is transferred from one place to another. Epic gives us the ability to have one chart for one patient. No longer will we have to have one electronic record for the USF practices and one electronic record at Tampa General. Instead they will be all the same. With Epic, we now have access to their entire health record, particularly about medications, recommendations from other physicians, and abnormal test results. Now those issues can be immediately recognized and addressed.”

Epic offers a way to more closely track care across the entire USF Physicians Group and Tampa General, providing a constant watch for contradictions, contraindications, and uses of standardized care. This ongoing analysis goes beyond strong team-based care, Dr. Bruder said, and gives the opportunity to truly impact and improve care.

In addition to her title with the Epic transition, Dr. Bruder is also associate professor, director of the USF Division of General Obstetrics and Gynecology, medical director of the Genesis Women’s Center at Tampa General Healthpark, and chief of Ob/Gyn at Tampa General Hospital. She is also active in the Florida Perinatal Quality Collaborative, a state-wide initiative aiming to improve the quality of health care quality and patient safety for mothers and their babies.

Her day is full of patient care and teaching medical students and residents. The passion she has for her career is easily seen by those around her – she clearly loves her job.

“Being an obstetrician is the greatest job in the world,” she said. “We get to experience the power of women who are carrying their babies, protecting their babies, then bringing their babies into the world and starting a new family. Some of my days I spend in labor and delivery, delivering new babies, doing cesarean surgeries, teaching residents how to do those deliveries, working with the nursing staff. Some days I’m at the Genesis Clinic. Every day is a little bit different and that’s what keeps it fresh and exciting for me.

“But I’m definitely the student as well as the teacher. I learn things from patients every day. I learn things from students and residents and the nursing staff every day. The teaching aspect of it for me is continuous. And because of my interest in quality, I’m able to share that with the residents and students and bring them into those conversations. We actually start teaching students at the medical school level about medical error and patient safety and best practices so that when they come to their residencies, those concepts are already familiar to them.

And the basis of those lessons is rooted in standards.

“Patient safety is really about developing standards of care and looking at processes in detail so we can avoid medical error,” Dr. Bruder said. “That is sometimes difficult to achieve, because there are so many parts of what happens to a patient from day to day. A lot of people are involved, a lot of steps happen between the patient and doctor conversation, the doctor ordering a test, the patient having the test, and then interpreting those results. Everything comes full circle, but anywhere in that process there can be an error that can affect the care of the patient. So our job with patient safety and quality is to look at national standards of care and then examine our processes to be sure we’re following those standards of care, and then making changes, piece by piece, until there is very little room for human error. The electronic health record helps a great deal with that.”

Loving her job comes naturally to Dr. Bruder, who always knew she wanted to be a doctor. The fact that she can incorporate her pursuit of patient safety into that career is an added bonus.

“I went to medical school to become an obstetrician gynecologist,” she said. “I’m one of the fortunate doctors who knew what I wanted to do before I got to medical school. And I’ve never changed my mind. It’s always been a great choice for me and a real source of joy and pride in my life to be able to take care of patients and to teach residents and students.

“When I was a young physician, just out of residency, I was invited to join the inaugural patient safety committee at ACOG, our educating and professional body of obstetrics and gynecology. That’s when I became aware of the Institute of Medicine report that was issued in 2001 and all the patient safety issues that were occurring in the United States. And since that time, wherever I’ve practiced, I’ve been very aware of patient safety issues, quality of care, how important it is for everyone on the patient’s care team to work together.”

And that’s where Epic comes into play again for Dr. Bruder. But only to a point.

“With all this new technology we still need to remember as individual physicians and as a team of caregivers, the most important thing is to be kind to the patients,” she said. “It’s always about the patients. It’s always about how we matter in their lives, it’s always about improving their lives, and it’s always about having a connection between them and us.”

Photos and video by Sandra Roa, USF Health Communications

TAMPA, FL  (Sept.  5, 2012) — USF Health is partnering with Bisk Education to offer a new online master’s degree  in Health Informatics, responding to the growing need for technology experts as the healthcare industry adopts electronic records.

“USF is proud to partner with Bisk to help drive innovation in healthcare,” said USF President Judy Genshaft, PhD. “There is a real need in today’s marketplace for employees who understand both healthcare and information science.”

The new program will fuse USF Health’s academic powers with Bisk’s online expertise. USF Health faculty members will teach the health informatics courses. Bisk will help adapt the USF Health’s traditional curriculum to an online environment with faculty-led video lectures and webcasts, online simulations, and real-time chat, group study, and discussion board tools.

Clockwise from top left: Andrew Titen, president and COO of Bisk Education; Dr. Stephen Klasko, CEO of USF Health and dean, Morsani College of Medicine; Judy Genshaft, USF president; and Nathan Bisk, chairman and CEO of Bisk Education.

Nathan Bisk, chairman and CEO of Bisk Education, founded the company, which is now one of the nation’s leading developers and marketers of alternative and distance education programs. He said he is looking forward to working with USF Health on the project.

“Health informatics is something that is sweeping the health industry – and it’s pioneering for a medical school to offer such a degree online,” he said. “There’s going to be a big demand for this program. The challenges the healthcare industry faces in converting to paperless operations will require a new breed of health professionals trained in the latest laws and technologies.”

USF Health already is a leader in moving the healthcare industry toward using electronic health records with PaperFree Florida, a $6 million federal grant program to help doctors learn how to use the technology, said Dr. Stephen Klasko, dean of the USF Health Morsani College of Medicine and CEO of USF Health.

“We’ve built USF Health around what’s going to be really obvious ten years from now and doing it today,” Dr. Klasko said. “What really brought us together is that Bisk has the same innovative values.”

Bisk Education CEO Nathan Bisk and USF President Judy Genshaft sign the partnership agreement to provide a new online master’s degree in health informatics.

According to Indeed.com, health information analysts earned an average of $81,000 in 2008, with a salary range of $34,000 to over $110,000.

Bisk designs high-quality educational courses by helping universities realize the potential for reaching students in an online environment, said Andrew B. Titen, president and chief operating officer of Bisk Education.

“We are all very excited about the new relationship with USF and look forward to launching this groundbreaking degree for a top tier research institution,” Titen said. “This is a partnership that will do many great things together.”

Students in the program could be Tampa Bay residents with career and family commitments that make it difficult for them to come to campus. But Bisk Education also will market the program worldwide, bringing students from far beyond Tampa Bay to learn from USF.

“We’re hoping this will lead to other degrees, which will extend USF’s reach worldwide,” Bisk said.

Courses for the 32-credit hour degree will start by May 2013. For more information visit www.usfhealthonline.com

L to R: Ronnie Banks, former USF Bulls quarterback employed by Bisk Education; Nathan Bisk, CEO of Bisk Education; and Judy Genshaft, USF president.

-USF Health-

USF Health’s mission is to envision and implement the future of health. It is the partnership of the USF Health Morsani College of Medicine, the College of Nursing, the College of Public Health, the College of Pharmacy, the School of Biomedical Sciences and the School of Physical Therapy and Rehabilitation Sciences; and the USF Physician’s Group. The University of South Florida is a global research university ranked 50^th in the nation by the National Science Foundation for both federal and total research expenditures among all U.S. universities.

-Bisk Education, Inc. –

Founded in 1971 by Nathan Bisk, Bisk Education is the world’s leading provider of professional education online. The University Alliance (UA), a division of Bisk, facilitates the promotion and online delivery of associate’s, bachelor’s and master’s degrees as well as professional certificate programs from the nation’s leading traditional universities and institutions. Powered by UA’s technology and support services, our university partners have surpassed 450,000 online enrollments – making UA the largest facilitator of e-learning in the country. University partners include Villanova University, the University of Notre Dame’s Mendoza College of Business, Florida Institute of Technology, Michigan State University, University of Florida, New England College, University of St. Thomas – Minnesota, University of San Francisco, Jacksonville University, University of Vermont, The University of Scranton, Dominican University, and Tulane University’s Freeman School of Business. U.S. News University Directory, part of the Bisk network, provides comprehensive and unbiased information on more than 2,000 academic institutions directly from U.S. News & World Report, the most trusted source for college and university rankings since 1983.

Media contacts:
Lisa Greene, USF Health Communications,  (813) 974-4312 or lgreene@health.usf.edu
Sandy Levine,  Bisk Education/University Alliance Online, 813-621-6200, ext. 328