Play Live Radio
Next Up:
0:00 0:00
Available On Air Stations

With Chronic Illness, You Are Your Own Best Friend

Jinx McCombs/via Flickr

It’s clear that what patients with chronic illnesses do outside the doctor’s office — how much they exercise, what they eat and whether they take their medication — can affect their health conditions.

But managing one’s own disease has been considered primarily a “nice extra,” said Kate Lorig, director of the Stanford Patient Education Research Center. Now, Lorig said, health systems, employers and insurers are starting to recognize that it is critical to good health care. And they are starting to invest in self-management programs.

“People with long-term chronic conditions spend 99 percent of their time outside of the health care system,” said Lorig, a professor at the Stanford University School of Medicine. “What they do with that time determines their quality of life, their health and also their utilization of the health care system.”

recent study found that diabetic patients who participated in a largely online self-management program designed at Stanford had lower blood sugar levels and took their medication more regularly. The study, authored by Lorig and others and published in the Journal of Medical Internet Research, also showed that many participants exercised more and had fewer symptoms of depression.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Self-management programs have been around for a long time, and Stanford is considered a leader in developing them. Researchers are experimenting with online and telehealth versions. In-person workshops have been proven effective in numerous studies, but the virtual programs have been less amply studied.

In the new, peer-reviewed study, 1,010 patients nationwide completed the six-week disease management workshop online and another 232 attended workshops in Georgia, Indiana and Missouri. The results were measured over a six-month period, although nearly 30 percent did not complete the questionnaire.

Nationwide, about half of adults have at least one chronic condition, and 1 in 4 has multiple illnesses, according to the federal Centers for Disease Control & Prevention.

Diabetes is one of the most common chronic diseases with about 22 million people across the nation diagnosed with it.

Many chronic diseases could be prevented — up to 80 percent of strokes and cases of heart disease and type 2 diabetes, for example — by eating better, getting more exercise and reducing stress, according to the California Department of Public Health. And that, in turn, could reduce health care expenditures, research shows. In California alone, 42 percent of annual health care expenditures are for treating arthritis, asthma, cancer, cardiovascular disease, diabetes and depression, a 2015 study found.

The patients in the Stanford study were recruited through Anthem, Inc. Throughout the course of the program, called Better Choices, Better Health, patients discussed several topics, including how to take medicine correctly, deal with fatigue and pain and communicate with family and friends.

Dr. Laura Clapper, a medical director for Anthem Blue Cross, said self-management for any chronic disease — and diabetes in particular — is crucial for members. “It strengthens the patient as a health care consumer,” she said. “They are empowered to ask good questions.”

And that, she said, makes for cost-effective care. Clapper said members who are better informed are “better users of health care dollars.”

The self-management program, licensed by Los Angeles-based Canary Health, isn’t designed only to give patients information. Rather, it allows them to discuss what matters to them and to draw up individual plans to improve their health, said Canary Health’s CEO, Adam Kaufman.

“The consumer should be an equal if not a greater partner in their health journey,” Kaufman said. “We have under-invested in this primary question in the health care system: What matters to you?”

Canary Health also offers Stanford’s online self-management programs for other diseases, including arthritis, heart disease and depression. Previous studies have shown that patients who participated in self-management programs had fewer emergency room visits and hospitalizations.

Lorig said one of the keys to the success of the workshops is getting patients to believe they can make changes. “The secret sauce seems to be giving people the confidence they can do things,” she said.

Ruby Mims, 71, who has had high blood pressure for the past decade, participated in one of the online self-management workshops this summer. The retired IRS agent from Raleigh, N.C., learned about it through her insurer, the Government Employees Health Association.

Mims said her older sister died of a stroke last year and she is doing everything she can to stay healthy, including walking and cutting back on soda and sweets. She said talking to others with hypertension gave her new ideas for managing her illness and made her feel less alone.

“Being able to help each other … was very uplifting,” Mims said.

KHN’s coverage in California is funded in part by Blue Shield of California Foundation.