MyJourney Compass put health information into patients’ hands
Like many who are battling cancer, Koren Sinnock was stopped in her tracks when she was diagnosed. So many questions and concerns about her health and treatment rushed to the surface. Still she was determined to not only survive but to thrive even as she began treatment. She now has new tool to help her do just that.
Sinnock was the first breast cancer patient in Rome, Ga., enrolled in a federally funded pilot program that has created a secure way for her healthcare providers to send information related to her care to a personal health record that she controls. It also allows for secure electronic communication between her and her cancer care providers.
She is among more than 25 patients who were enrolled prior to the Monday, Aug. 12, launch of MyJourney Compass, which “empowers patients to actively participate in managing their cancer through the use of mobile technology.”
Enrolled patients each have been issued a Google Nexus 7 computer tablet. Those tablets are outfitted with apps, bookmarks and resources pertinent to their cancer journey. With the help of the nonprofit Cancer Navigators, they are trained to not only use the tablets and apps but also to create a Microsoft HealthVault account. It is through HealthVault and technical interfaces created by Georgia Tech and Rome’s Harbin Clinic, Floyd Medical Center and Redmond Regional Medical Center that participating patients can receive their health records and communicate securely using MyJourney Compass.
What it means for Sinnock is that she can travel, perhaps for a trip to the beach this summer, and know that she has her health information handy in case she has any issues while away.
“It gives me a sense of freedom that I can actually leave town and know that I can have my medical information related to my cancer with me,” she said.
The 7-inch, 12-ounce Android tablet also affords a compact place to store volumes of educational material. “When I first got diagnosed, I got handed huge stacks of papers, handouts and books. 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.”
So now, much of that information is pre-loaded on the tablet while credible websites are bookmarked. Off-the-shelf apps like Cancer.net and Caring Bridge are also installed along with a calendar for keeping track of appointments, personal email, maps and profiles of local cancer care providers.
“I was excited when I was presented this opportunity. I had been online trying to find information on my own, not knowing what was credible and what was not,” Sinnock said. “This provides quick, easy access. The tablet was preloaded with information that answers most questions people may have as well as apps and other tools.”
In addition, Georgia Tech has created a Symptom Tracker app that patients are encouraged to use. It charts the symptoms and ratings, which can be sent to the patient’s healthcare provider.
The mobile technology is a tool for patients to more actively participate in their own healthcare and could become the template for patient experiences around the country since that is the purpose of this federal challenge grant project.
“There is substantial evidence that patients who are more involved in their healthcare are more likely to have better outcomes, which is why there is such a keen interest in consumer engagement overall,” said Philip Lamson, a senior health care consultant with Georgia Tech who is coordinating the project. “The Rome project’s goal is to provide information technology tools that enable breast cancer patients to use health information technology as a way to improve their experience of living with cancer.”
Why Rome, Georgia?
For the past decade, Rome – located 65 miles northwest of Atlanta – has been an incubator for numerous collaborative efforts around cancer. From establishing the Rome-Floyd Cancer Initiative and the Northwest Georgia Regional Cancer Coalition under the leadership of Gena Agnew to building a state-of-the art cancer center, this community has always been at the leading edge of creating personalized and accessible cancer care.
Harbin Clinic, Floyd Medical Center, Redmond Regional Medical Center and Agnew’s coalition have all worked to create a collaborative cancer care network. Five years ago that same energy gave birth to Cancer Navigators, a community-based nonprofit that helps guide cancer patients and their loved ones through the healthcare system and their cancer experience.
Now Cancer Navigators is enrolling breast cancer patients, setting up the tablets and training patients to use them along with the MyJourney Compass technology. “The fact that Rome had an established navigation program is one of the main things that got this project attention at the federal level,” said Lamson.
Agnew was part of the team that submitted the Consumer-Mediated Health Information Exchange grant application. In 2011, the Georgia Department of Community Health and the Georgia Cancer Coalition were awarded a $1.7 million federal grant to create a patient-centered health information exchange in Rome.
“The project is funded by the federal government’s Office of the National Coordinator for Health Information Technology (ONC) through an award to the Georgia Department of Community Health (DCH), which engaged Georgia Tech to coordinate the project. It is one of 10 Challenge Grants that were awarded nationally and one of two that address consumer engagement,” stated Kelly Gonzolez, chief of DCH’s Division of Health Information Technology.
“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. “The work in Rome will serve as a model to other patients, providers and communities across the country who want to leverage health information technology to engage patients in their care.”
Agnew says it makes perfect sense that Rome was chosen for such a project. “Here we have a private physicians’ clinic with a stand-alone cancer center, a private and a public hospital, a group of patient navigators and the NWGRCC. Our cooperation is so well known that we were the first – and only – community considered to participate. We moved slowly at first knowing that consumer information technology is rapidly changing. As a result were able to take advantage of the emerging, increasingly economical, mobile marketplace. Now we’re able to put inexpensive, people-friendly, mobile technology directly in the patients’ hands. How exciting is that?”
“We’re the tip of the spear nationally,” said Andy Helm of the Georgia Tech Enterprise Innovation Institute. “We’re laying the groundwork here in Rome for what’s going to happen in communities around the nation.”
More Personalize Healthcare
It stands to reason that two-way communication between patients and their healthcare teams between appointments can result in more personalized care. It empowers patients to engage more in their own medical care.
“MyJourney Compass is a tool giving patients access to some of their health information and facilitating secure communication between them and their cancer care providers via mobile technology. As a physician, I feel anytime we can empower patients to more fully participate in their own health and wellness that it can help reduce stress, help them complete vital treatment and help foster better communication between doctor and patient,” said Dr. Matt Mumber, radiation oncologist and co-director for Harbin Clinic’s Integrative Oncology Program and author of the book “Sustainable Wellness.”
He added, “The Symptom Tracker app should have great benefit for both patient and physician alike in that it will help us record and review key symptoms and their progression. Because it engages patients between appointments, it keeps them mindful of what is happening with their body and allows them to share that with their cancer care team. That can help shape their treatment and care plan and perhaps even give us valuable data for future research.”
Rome’s two hospitals are excited about what the project may mean for the future. “Floyd is pleased to be a participant in this project and we are encouraged about the comprehensive cancer care services that can be accessed through these new tools,” said Jeff Buda, chief information officer for Floyd Medical Center. “These patients require services from several different providers and venues, and this is a great example of how the health care providers in the Rome community, in partnership with Georgia Tech and other partners, collaborate to deliver high-quality, high-tech and high-touch healthcare services. We believe this is a unique model that raises the bar on breast cancer care, and we are grateful for the collaboration of our partners and the opportunity to serve these patients.”
Ann Hook, Redmond Regional Medical Center’s oncology service line director, says the project is more about patients than technology. “This initiative strives to use the latest technology to maximize collaboration among all care providers while empowering the most valuable partner, the patient. Interoperability is a key ingredient to safe, effective patient care. Redmond is excited to be a part of creating a more patient-centric approach to oncology care.”
Health Information Technology
Under the umbrella of the DCH, Georgia Tech experts, including Myung Choi, director of Tech’s Interoperability and Integration Innovation Lab, took the lead on getting the technical infrastructure in place. Then Harbin, Redmond and Floyd each played crucial roles in the local implementation.
The primary goal of MyJourney Compass is to provide patients access to their health information and their care providers in a secure way so they can more fully participate in their health care. Partners agree that the mission is to improve the overall cancer survivorship experience in Rome by increasing the use of personal health records by engaged patients, providers and caregivers through data exchange.
At the center of the secure transmission of health information is Georgia Direct, which is part of DCH’s Georgia Health Information Network.
The concept is that providers and patients having improved access to key clinical information will result in better-coordinated and focused care. Since cancer is one the most complicated of all medical conditions, if this can work for cancer patients it should work for those dealing with other chronic diseases.
The project has taken a year and a half of contract negotiations, technical programming, work flow and patient experience planning as well as coordination of stakeholders at the national, state and local level. But finally patients like Sinnock and others now have a tool helping them to fully engage in their own healthcare.
Monday, Aug. 12, marks the official unveiling of MyJourney Compass, even though Sinnock and other patients have been using the tablets and offering their feedback since early June.
Sinnock said she signed on to be part of the project for two reasons. First, she already used smart technology and saw it as valuable tool during her cancer treatment. Secondly, she saw it as a way of helping others facing cancer in the future.
“I thought of this as a way of helping someone like me by helping to create the process and figuring out what works,” she said. “I think this is so cool – that Rome, GA, is creating something the whole country might use.”