C.J. Burton
It's the last mile in the race to fix health care—getting patients more involved.
Hospitals, doctors and public-health officials are pushing patients to keep track of their medical data, seek preventive care and stay on top of chronic conditions. They're measuring how motivated patients are to manage their own health and adopting a wide range of strategies to help them do better, a concept known as patient engagement.

JThe federal government, for instance, is promoting new initiatives to give millions of Americans access to their medical records online, so patients can use them to better manage their health. Providers, meanwhile, are mining those records to find patients who aren't compliant with their regimens or missing preventive care, and nudging them to take action. And new mobile applications help clinicians keep a closer eye on patients' progress in things like diet and exercise.

Driving this effort is a pressing shortage of doctors that leaves medical teams scrambling to provide the care patients need, even as more people develop chronic conditions like diabetes that need regular attention. Meanwhile, costs are soaring, and the choices patients face over insurance coverage are getting more complex and demand much more informed decisions.
Studies show that more-engaged patients have lower costs and better health outcomes. When more engaged with care, patients and families can help prevent drastic mistakes or oversights, such as identifying a wrong drug or dose they get from the pharmacy or notifying a doctor about a strange medication side effect, according to the National Patient Safety Foundation. But the vast majority of Americans, the nonprofit group warned in a recent report, "remain relatively uninformed and passive recipients of health care services and thus lack the confidence and skills needed to fully engage in their health care."
The More You Know
The Institute of Medicine, which cited patient engagement as key to an effective health-care system in a 2012 report, urged doctors to use technology to fill the gap.
One basic step is making sure people have easy access to their medical records online, so they can do things like check their data to make sure it's accurate and all their doctors have the same information. Some providers are offering after-visit summaries and providing patients with access to their doctor's notes about them.
Becoming familiar with one's own health records can help patients better understand their own condition and have more informed conversations with doctors, says Lygeia Ricciardi, director of the Office of Consumer eHealth in the federal office of the National Coordinator for Health Information Technology. And with the flood of new fitness and health apps, consumers can plug in data from their own medical record, such as generating a fitness regimen that takes into account a knee injury, weight and blood pressure. "Getting access to personal health information is the start of engaging patients to be full partners in their care," she says.
The federal information-technology program is promoting expansion of the Blue Button connector, a program that securely provides health records to patients online. Launched in 2010 as a link on the Veterans Health MyHealtheVet website, Blue Button lets veterans create a single file with all their personal health data. Last year, the VA significantly expanded the types of information available, including lab results, doctors' notes, problem lists and wellness reminders; more than 974,000 unique users have downloaded more than 6 million files.
The Centers for Medicare and Medicaid Services is now using a Blue Button connector to make health-claims data available to Medicare beneficiaries, as are the Defense Department and Indian Health Service. Payers including Aetna Inc. and Humana Inc. offer a Blue Button link that lets members download personal health records into a single file, and retail pharmacy chains are in various stages of using Blue Button to let customers download prescription histories. Combined, Ms. Ricciardi estimates Blue Button participants reach about 170 million Americans.
But many consumers aren't aware they can download records, or understand how they can be helpful, says Kyra Bobinet, co-instructor for a Patient Engagement and Design course at Stanford University's medical school. Dr. Bobinet, who also has a consulting firm, engagedIN, helped improve the design of the Blue Button website to make it more user-friendly and helped with the messages for a consumer-awareness campaign about Blue Button to be launched this fall. The effort includes ads that say, "Ever forgotten a tiny detail? What if your life depended on it?"
Providers have incentives to help patients pay more attention to their medical records. To qualify for federal funding to help them replace paper files with electronic records, doctors must meet requirements to show "meaningful use" of the technology—including engaging patients and families in decision making and providing them with their health records and clinical summaries they can view, download and share with other doctors. The meaningful-use requirements also specify a percentage of patients must actually use the information, which gives doctors a reason to encourage them to do so.
"If your doctor says, 'Hey, have a look at your records,' you are more likely to actually do it," Ms. Ricciardi says.
Tailoring the Information
Beyond letting patients see their medical records, health-care providers are making efforts to give them specially tailored information and tools that help them change their behavior.
"Personalization is a key factor in engaging patients in their health and keeping them motivated to maintain healthy behaviors," says Joseph Kvedar, director of the Center for Connected Health at Boston-based Partners Health Care System Inc., which includes Brigham and Women's Hospital and Massachusetts General Hospital, both affiliated with Harvard Medical School.
The center last year launched a website, Wellocracy, to help people wade through the flood of health trackers and mobile apps on the consumer market, to figure out which technology best suits their personality, motivation and health goals. The center also is working on a number of programs that use technology to help patients manage chronic conditions and maintain wellness.
Blood Pressure Connect allows patients to measure their blood pressure from home, using a cuff with a Bluetooth radio and a device that captures the signal and sends it into a secure data repository. Providers can then review the data. In a 2012 study of 219 patients, all were able to decrease blood pressure significantly despite wide variation in age and type of medications.
"People who are disengaged in their health are the toughest group to manage and indeed account for a disproportionate share of health-care costs," says Dr. Kvedar. "Our eventual goal is to get their attention and then use our personalized messaging apps and tools to keep them engaged."
The center's researchers are evaluating other programs, including movement-tracking videogames to help in rehabilitation after orthopedic surgery and highly personalized text messaging based on sophisticated software algorithms to help smokers kick the habit. For example, users can send an inbound text like the word "crave" and the system will return information that helps them deal with their hunger for a smoke. Another text-messaging-based program being studied helps improve activity levels in patients with diabetes.
At Mass General's Charlestown HealthCare Center, primary-care physician Rajani LaRocca provided a fitness tracker for a group of patients aged 59 to 70 with diabetes last year who met weekly for six weeks to walk and get counseling on how to live a healthier lifestyle. While wearing trackers, the patients increased activity, Dr. LaRocca says. Some lost a significant amount of weight and kept it off, and more than half still use the tracker.
Even though Dr. LaRocca went the extra mile, walking with patients herself some days, "as doctors we are only with our patients for a short amount of time, while they have to keep up these behaviors every day," she says. "If we can get people engaged and energized and empowered, things are only going to get better."
Laura Jennings Cranford, 72, participated in the program, and says it has helped her with a continuing struggle to lose weight and keep up exercise. Data from the tracker was uploaded to her medical record, where she could view it online. "Once you start seeing the numbers, you begin to think you can do more by taking an extra walk around the block," she says. "It really got me moving."
Walking Them Through
Another way to keep patients engaged is personalized information and advice. More than a decade ago, Healthwise Inc., a nonprofit in Boise, Idaho, pioneered the idea of doctors writing "information prescriptions" in the form of a video, brochure or interactive decision tool to help patients better deal with a health problem. Chief Executive Don Kemper says new technology has helped make it easier "to get each patient just the information they need, at the time they need it and in a way they will trust and use it."
About 15% of practicing physicians in the U.S. now deliver information prescriptions created by Healthwise through their electronic medical record, including links that connect patients to an online health encyclopedia to learn more about their own health issues.
For example, doctors who are too busy to go over medication issues with patients in detail can prescribe an online program called "Beta-Blockers to Prevent Another Heart Attack," which helps patients understand how the drugs work and why it is important to keep taking them. Healthwise also is piloting the use of automated phone calls with interactive voice-response technology that prompts patients to answer questions such as whether they are having a problem after a hospital discharge, so staff can intervene.
To help make educational programs for diabetics more fun, Healthwise created Oscar, a character that walks people though various scenarios they may run into while trying to manage the condition—such as being at a picnic and being offered a sugary dessert by an aunt they don't want to offend. Participants post comments online discussing choices Oscar might have made.
Patients are also sent daily text messages or emails, and are required to review a health video or article and share what they learned from it, as well as report on the progress they are making with a goal for the week.
Jo Diamond participated in a Healthwise study testing the approach in the Dallas area last year. Diagnosed with diabetes 17 years earlier, she says she lived in denial of it for a decade, gaining weight and changing doctors every few years, often dealing with spiking blood-sugar levels and depression. Through her job at a package courier service, she signed on for the study, enjoying the online discussion about Oscar's options and the ability to communicate with other patients.
"It helped me to really take note of where I am in the diabetic stage and what I need to do to improve myself," she says.
Ms. Landro is an assistant managing editor for The Wall Street Journal in New York and writes the Informed Patient column. She can be reached at laura.landro@wsj.com.