As a teenager, Kyna Fong’s after-school job was quite a challenge. Kyna and her brother Conan where charged with helping their dad work with insurance companies and assist patients in his primary care practice.
Those early encounters gave Fong, a former Robert Wood Johnson Foundation (RWJF) Scholar in Health Policy Research (2008-2010), an intimate look at the needs of patients and providers. “That’s why my brother and I knew there was a need for a new type of electronic medical record [EMR],” she said.
Fong, who now has a PhD in economics, is one of many RWJF grantees who are maximizing the potential of technology to improve health. They are breaking new ground by finding innovative ways to use some of our favorite gadgets to perform research and inspire people to live healthier lives.
After listening to her dad’s concerns and those of other health care providers, Fong and her brother created the ElationEMR, a product designed to enhance the physician/patient encounter. “Most EMR systems are built for billing and compliance purposes,” Fong explained. “But a physician’s goal during an office visit is not to document things and sort through files, it’s to listen to the patient and have rapid access to information that helps them to determine diagnosis and treatment.”
To facilitate this process, ElationEMR gives providers seamless access to all relevant patient history, and lab and other test results on a single screen. “We call our approach ‘clinical first,’” Fong said. “Physicians told us that other EMRs turned them into data-entry clerks. They were being distracted from the patient’s needs because they had to enter or search for information.” ElationEMR, which is being used to care for more than 300,000 patients so far, solves that problem.
“I am also convinced that using the big data collected by ElationEMR and other tools will someday explode medical knowledge and improve the care we receive,” Fong added.
A Patient Power Platform
After Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29, brothers Benjamin and James Heywood and longtime friend Jeff Cole built PatientsLikeMe, a health data-sharing platform with the goal of transforming the way patients manage their own conditions, changing the way industry conducts research and improving patient care. Thousands of people from all over the world have contributed to more than 600,000 outcome surveys, 300,000 treatment histories, 2.3 million symptom reports, and 1.2 million message board posts on the PatientsLikeMe site.
Now, with support from RWJF, PatientsLikeMe, is creating the Open Research Exchange (ORE), a platform where researchers can collaborate with patients to design, test and openly share new ways to measure diseases and health issues. The ORE involves patients at each step of the measure development process, enabling PatientsLikeMe’s 200,000+ members to guide and contribute to research so that it better reflects their needs.
But when it comes to health, no other device has captured the public’s imagination quite like the cell phone. Approximately 75 million people use their phones to gather health information, according to the 2012 Cybercitizen Health® survey conducted by Manhattan Research.
In response, RWJF grantees have transformed the smartphone into a tool to protect health. Some of the most creative projects include:
■ Change My Steps. “Rates of heart disease are slowly dropping in much of the population, but they are declining less rapidly among Black women,” said Chileshe Nkonde-Price, MD, a cardiologist and RWJF/U.S. Department of Veterans Affairs Clinical Scholar (2012-2014). Price added that many Black women are also unaware of their heart disease risk.
“I began looking for a unique way to reach Black women. As a cardiologist, I was always telling people to eat healthy and exercise, but that was just information. I wanted to give them more,” she said.
Price decided to use a smartphone app and Twitter to bring Black women together in virtual teams of walkers. The teams keep in touch, compete for small prizes, and get healthy eating tips via Twitter. “I started by recruiting 16 women through a hair salon in Philadelphia. None of them had formally exercised before, so I had them start out with a goal of 1,000 steps a day,” she said.
The Change My Steps project now has teams in Atlanta and South Carolina as well as Philadelphia. All team members are walking 5,000 to 10,000 steps a day or more (2,000 steps is approximately a mile). “The technology made it possible for people who had not been physically active to get fit and get support for free. No gym membership. Even the apps were easy to use,” said Price, who is now recruiting larger groups of women.
■ Helping parents and preemies. Estrellita, a program supported by RWJF’s Project HealthDesign, turned a smartphone app into a source of support and encouragement for parents of infants with special health needs.
“Our app connected parents to a site monitored by a nurse coordinator, with a virtual (avatar) MD,” said Dini Baker, MSN, RN, co-investigator for Estrellita’s 2012 pilot run. “We worked with parents of children at risk for developmental delay and made it possible for them to share their concerns with other parents and have interactive access to medical advice.”
Light-up apps also rewarded parents for facing some of the more challenging issues associated with taking care of a special needs child, such as fear taking them outdoors or bonding too closely.
■ Track Your Happiness. What lifts our spirits and helps us fight depression? Matthew Killingsworth, PhD, a psychologist and RWJF Health & Society Scholar (2012-2014) is determined to answer that question by tracking our moods in real time using a smartphone.
“I’ve surveyed more than 30,000 anonymous participants with questions that measure their happiness and examine the link between happiness and the activities of their everyday lives,” Killingsworth explained. “Real-time measurement is the gold-standard for quantifying happiness, but it’s been massively underutilized. The smartphone makes it possible to find out exactly how people feel when they are working, studying, sick or well, on a large scale.”
His latest finding is also quite a surprise. “Our minds wander about 50 percent of the time, but we are not all that happy while we are doing it. People are much happier when they are focused on what they’re doing, even during unpleasant tasks,” he reported.
When Tina Bloom, RN, PhD, MPH, began her career as a labor and delivery nurse, the last thing she expected was to discover that one in seven pregnant women report incidents of physical violence. “I was flabbergasted by the level of domestic abuse they were experiencing,” explained Bloom, an RWJF Nurse Faculty Scholar (2011-2014).
Once she understood that the highest standard for domestic violence protection was safety planning, Bloom created a tool that could help pregnant women protect themselves.
“Our Internet program walks women though questions that assess their level of danger and priorities so that they can work through the confusion that often comes with these situations. This is the first Internet-based tool that helps abused pregnant women access safety planning,” Bloom said.
“Women tell us the program is very helpful in determining whether they are in a dangerous relationship,” she added.
The technology allows women who are unable to discuss their situations with other people to get help and it gives women in rural areas a valuable resource.
These projects make it clear that RWJF grantees are fully embracing technology’s ability to bring about a revolution of improved health and health care.
For an overview of RWJF scholar and fellow opportunities, visit www.RWJFLeaders.org.