National Pilot Project Uses Information to Improve Cancer Treatment

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An experimental health information exchange being tested in the north Georgia city of Rome is helping Koren Sinnock keep her travel plans. A breast cancer patient, Sinnock had been reluctant to travel very far from her doctors until the new program promised to provide access to her medical records from anywhere she might happen to be – including the beach.

“It gives me a sense of freedom that I can actually leave town and know that I can have medical information related to my cancer with me,” she said. “I’m excited to be part of creating something that other people across the country might use.”

Providing easy access to medical histories and treatment records is just one aspect of MyJourney Compass, a pilot project designed to help patients navigate the complex cancer treatment process and become more involved their health care decisions. Operated through the Georgia Department of Community Health, the project resulted from collaboration that includes two hospitals, a doctor’s group and cancer support organizations in Rome. The overall project, funded by the federal Office of the National Coordinator for Health Information Technology (ONC), is managed by health information specialists at the Georgia Institute of Technology.

“This really has the potential for making people’s lives better through education and knowledge, which empowers people,” said Phil Lamson, a health care consultant with Georgia Tech’s Enterprise Innovation Institute. “Using MyJourney Compass, patients can have more direct communication with their providers on the common symptoms that often accompany this disease.”

MyJourney Compass represents the merger of coordinated community cancer care with technology. Rome already had a coordinated, integrated and centralized cancer care system that helps patients navigate the often confusing network of doctors and treatment options. The program’s hardware technology – inexpensive Nexus 7 tablet computers connected to a secure network – helps patients communicate with health care providers, access their health information and obtain credible information on the Internet.

A symptom tracker application developed at Georgia Tech and loaded on each tablet allows patients to provide frequent feedback to health care providers when necessary. For a patient prescribed a new pain medication, for example, the app may ask for updates several times a day to help the doctor judge whether the drug is doing what’s needed.

“Doctors know what they need to track, and when the patients report in periodically, there can be an intervention early if there is some deviation from what’s expected,” Lamson explained. “If more frequent communication between scheduled appointments prevents a trip to the emergency room or admission to the hospital, that’s a big benefit for everybody.”   

The project is funded by a federal challenge grant designed to encourage new health information technology applications. The pilot project launched officially on August 12.

“The project is funded by a $1.7 million grant from ONC through the Department of Community Health (DCH),” noted Kelly Gonzalez, health information technology coordinator for DCH. “It is one of ten challenge grants awarded by ONC to projects across the country, and is one of only two focusing on health care consumers.”

Rome was chosen for the national pilot project because the community had already come together to fight cancer. Collaboration among the community’s health care providers made it easier to launch the study.

“Everyone is amazed at the level of cooperation in our community,” said Gena Agnew, president of the Northwest Georgia Regional Cancer Coalition (NWGRCC). “Here we have a private physician’s clinic with a standalone cancer center, a private and public hospital, a group of patient navigators and the NWGRCC. The cooperation is so well known that we were the first community considered for participation in this.”

Collaborators in Rome include Floyd Medical Center, the Redmond Regional Medical Center, the Harbin Clinic, Cancer Navigators and the NWGRCC. At the state level, the project involves the Georgia Department of Community Health and Georgia Tech. Within Georgia Tech, the project includes specialists from the Enterprise Innovation Institute, Georgia Tech Research Institute, College of Computing, and Institute for People and Technology.

MyJourney Compass uses established technology to provide electronic access to patient records, which are housed in Microsoft’s secure online HealthVault service. Secure email is provided through GeorgiaDirect, a service provided as part of the Georgia Health Information Network operated by DCH. The symptom tracker app was developed by Georgia Tech’s Interoperability and Integration Innovation Lab (I3L).

So far, 25 patients have signed up to use the system, and Lamson hopes as many as 100 breast cancer patients will be using the information exchange once the program is in full operation. Georgia Tech will be evaluating the patient outcomes and studying patient satisfaction.

Sinnock is already pleased with the 12-ounce tablet computer, which replaces a pile of printed materials she was given along with her diagnosis. “They handed me stacks of papers, handouts and books,” she confessed. “I just stuck it all in the closet and didn’t even look at it because that giant pile of information was just too overwhelming.”

The team implementing MyJourney Compass expects that the pilot project will demonstrate new ways of leveraging technology in health care and be applicable to treatment of other types of disease, including chronic health problems, hypertension and diabetes.

“The MyJourney Compass project is empowering patients to become actively engaged in their care, an important requirement of our consumer-focused State HIE Challenge Grants,” said Kory Mertz, challenge grant program manager at ONC in Washington, D.C. “The work in Rome will serve as a model to other patients, providers and communities across the country on leveraging health information technology to engage patients in their care.”

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