The pivotal part of the Stanford program asks patients to create their own Action Plan—which includes a number of tasks that they want to put into practice each week. One woman in her 50s who had diabetes wrote on her plan that she would eat no more than two candy bars a day. "I usually eat eight," the woman told Lorig, "so this is a big step for me."
"A health care professional would have given her a lecture," says Lorig, "but I encouraged her because I understood how huge this was for her."
Diagnosed with lymphoma in 2004, Lorig found it difficult to implement one of the key elements of the self-management program: effective communication with friends and family. "At first I had a problem asking for help," says Lorig, who lives alone. "Then I realized that my job was to figure out what I needed and identify which people in my life could do which job."
One fashion-savvy friend "was absolutely useless in a sickroom," she recalls. As Lorig lost her hair during chemotherapy, she needed head coverings. "So I gave her $100 and asked her to buy some hats, and that she did." One neighbor cleaned Lorig's cat's litter box daily; another took out trash for her sick friend.
Stanford's Chronic Disease Self-Management Program (CDSMP) launched in 1992, and the results were impressive. People who completed the program had more energy, engaged in more social activities, gained confidence, improved communication with physicians, and developed an overall sense of empowerment. Lorig published these results in the journal Medical Care in 1999, along with even more tangible findings: those who completed the program reported fewer doctor visits and fewer nights in the hospital. Overall cost savings could be substantial. Based on a conservative savings estimate of $500 per patient, if even 10 percent of the 133 million chronic-disease sufferers entered such a program, health care savings would be $6.65 billion in the first year alone.
First adopted nationally by Kaiser Permanente in 1998, the CDSMP and others like it have spread rapidly and are now offered in most states and 20 countries. "I just feel awe at how it's taken off," says Lorig, who has adapted her workshop for online use and whose book—Living a Healthy Life With Chronic Conditions—is now in its third edition.
"This is a powerful program that has transformed the lives of people who go through it," says June Simmons, CEO of Partners in Care Foundation, a nonprofit community health organization responsible for disseminating the Stanford program throughout California. The foundation has offered 285 workshops and reached more than 3,600 Californians; it aims to enroll 9,500 Californians by 2011. "That's still not enough," insists Simmons. "The current system needs to provide more funding and insurance reimbursements so it can be more widely available."
With the exception of Kaiser, which pays workshop trainers and offers the Stanford program as a standard benefit, most insurers do not cover the cost of prevention and self-management programs. "Few people get reimbursed for these programs," says Lorig, "which is why we need health care reform."
"Most health plans are only beginning to address chronic-care management," adds NCOA's Nancy Whitelaw. "There's a disconnect in the traditional medical-treatment model in that the importance of prevention, nutrition, and disease self-management is not yet embedded in our notion of what delivers health. But we're trying to change that."