In just a 24-hour period, patients in the hospital typically see a variety of doctors, nurses, x-ray technicians and other medical professionals, and undergo a plethora of diagnostic tests – without an understanding of how all of it comes together to make them well.
The Diversity and Cultural Competency Council (DCCC) at Boston Children’s Hospital recently conducted a three-year study on patient satisfaction. It found that the main reason patients were sometimes dissatisfied was because they felt unfamiliar with the medical information they were receiving, and had difficulty understanding who was part of their care team and how best to communicate with them. And so the idea of MyPassport was born.
A paper passport
It began as a paper booklet with pictures and titles for every care team member, and pages for lab test results and summaries. Patients could curate their information in one place, understand the roles of the people who rotated in and out of their rooms, track their treatments and learn what their lab results meant. The booklet also included the patient’s plans for the next day, a place to write down questions for their providers and information about being discharged.
"It empowered parents and improved the communication and coordination of care," says Marilyn Moonan, RN, BSN, CPN, CCTN, a member of the DCCC research team. "Families felt part of the medical decision-making process." Overall, patients and families who used MyPassport reported better understanding and fewer instances of miscommunication.
Urologist Hiep Nguyen, MD, an early technology adopter, wanted to go to the next level. "We had one staff member spending her entire day updating these paper versions with data," he recalls. "I knew that it would be difficult to go hospital-wide with this unless it was more efficient."
Nguyen applied for and won a Boston Children’s Hospital FastTrack Innovation in Technology (FIT) award from the Innovation Acceleration Program that gave him access to experienced software programmers for rapid cycle development. With these resources, MyPassport graduated to an iPad application.
The app automatically pulls patient data from electronic medical records in Epic and Power Chart, and displays it in a way that’s meaningful to patients and families. It helps patients proactively engage with their care team to get their questions answered, and feel more prepared to leave the hospital, armed with home care instructions.
"We see MyPassport as a new opportunity to deliver real-time, personalized health information to patients and their families, and to enhance and change care delivery dynamics," says Naomi Fried, chief innovation officer.
The app is in a small pilot trial, with the goal of eventually providing it to more patients on other inpatient floors. "We want to test the MyPassport prototype in an environment where we can learn about what works and doesn’t work with this new form of electronic interaction," says Alex Pelletier, FIT program manager, who is leading the technical development team.
Preliminary survey data indicate that 90 percent of participants to date find it easier to get their child’s health information.
Take test results. "Paper-based blood-draw results come on a piece of paper with the letters L and H, which can be confusing to parents," Nguyen explains. "Now, a computer translates the result to display whether it is normal or abnormal, and where the patient falls on that spectrum. Parents can reference the lab and have a dialogue with their provider about why a result is abnormal, and what that means."
Also helpful is being able to ask questions when the provider is not in the room – in an instant-message-like format that allows the provider to answer remotely. "So often, a doctor will come by to see a patient at a very specific time, tell the family very specific information, and need to leave shortly," says Nguyen. "The family really needs time to process all that before they can ask meaningful questions."
The iPad version of MyPassport also takes a lot of fear out of going home, often a jarring experience for families. The care team enters a list of goals for each patient – such as standing or walking – to help determine when he is ready to go home. During their hospital stay, the patient and family can track their progress and feel more in control.
What lies ahead
Once the pilot testing ends, Nguyen and his team plan to roll out MyPassport in other languages and to patients not just on other floors, but in other countries.
"A doctor from abroad or a referring embassy could log in to the patient’s Passport to see how they’re doing, what their lab results are, and read their questions and concerns," says Nguyen. "They can feel totally connected to their patient’s care, and part of the process."
In the future, MyPassport could also benefit patients outside Boston Children’s: Other health institutions may be able to use MyPassport to care for their patients, and there’s talk of future collaboration with development partners to take the application to the next level.
For now, the application is changing the experience at Boston Children’s, one patient at a time. "Patient families aren’t just letting things simply happen to them anymore," says Nguyen. "They’re becoming more involved in their care and enjoying it. It’s working."