Care improves when patients teach MDs

Program proves seeing leads to understanding

No one understands what it means to live with arthritis better than someone who wakes up and faces each day with this disabling condition affecting 40 million Americans. Patient Partners, an innovative arthritis education program sponsored by G.D. Searle in Skokie, IL, believes arthritis patients are the best instructors to help physicians understand what it means to live with arthritis.

"Health care professionals tell us the program has proven to be a powerful way to teach people about arthritis, whether they’re medical students, established physicians, or patients," says Carl Derinfeld, MBA, CSW, senior director of the arthritis therapeutic team at Searle. "The Patient Partners are very helpful from an anatomy standpoint but also do an excellent job demonstrating to providers and patients the life implications of having arthritis."

"It’s hard to describe the inflammation around the joint unless you show it," says Lee Simon, MD, medical director of the Patient Partners Program at Beth Israel Deaconess Medical Center/Harvard Medical School in Cambridge, MA. "We think this kind of teaching makes better medical professionals in the end. Our students agree, often telling us that the Patient Partners sessions are among the best learning experiences they have had."

Simon says programs like Patient Partners fill a gap in traditional medical education. "In the past, students were taught the mechanics of the disease and its treatment. Patient Partner instructors help foster a better understanding about what it feels like to get up in the morning and not be able to tie your shoes or turn a doorknob," he notes. "Experience with Patient Partners can really sensitize doctors and help them realize that they are not just treating a collection of swollen joints."

You’ve got a friend

Patient Partners also are trained to help others with arthritis learn to cope with it. At community health education meetings, Patient Partners teach arthritis sufferers how to communicate more effectively with their providers. They also share information about improving quality of life, new devices, and treatment options.

The program began in 1992 with 350 Patient Partners recommended by their rheumatolgists, says Derinfeld. Now, the program operates with roughly 200 Patient Partners, but Searle still asks physicians to recommend patients with these characteristics:

Diagnosed with rheumatoid arthritis. "We have trained some Patient Partners with osteoarthritis, but most have rheumatoid arthritis," explains Derinfeld. "Rheumatoid arthritis patients present good diagnostic findings that make them good candidates for teaching physicians and medical students. In addition to interesting clinical findings, they have major psychosocial events in their lives."

Committed to making an investment in others. "It’s a program that doesn’t pay a high stipend, so people have to be motivated to transfer their life experience to improving the lives of others with arthritis," he says.

Demonstrate a desire for self-empowerment. "We wanted to use patients with good self-care practices, who are actively partnering with their providers to take an active role in the management of their disease," he explains.

Demonstrate good verbal skills and teaching ability. "More than good verbal skills, we needed people with a presence," he says. "These people had to be willing to stand up in front of groups of physicians and medical students and their peers and participate in a very rigorous program."

As it moves into a new phase, the Patient Partners Program has become a regional model. "In the beginning, all the Patient Partners went through a training program developed and taught at the University of Texas Southwest in Dallas," says Derinfeld. "Now, we’ve moved from a central training model to a regional model of training. We take the best and the brightest of the Patient Partners and teach them to train new Patient Partners. It’s going to make us much more efficient. We’re not going to have to send everyone to Texas for training anymore."

Certified to teach

Patient Partners go through a rigorous training program, and they are required to be re-certified at specific intervals. The course covers:

Anatomy. "The materials discuss the 80 trigger points for arthritis on a learning level equivalent to that received by a medical student," notes Derinfeld. "After all, we expect [Patient Partners] to turn around and teach medical students and physicians how to perform a full body, hand, and wrist exam including all 80 trigger points."

Psychosocial aspects. "This covers many issues of the impact of the disease on all aspects of a patient’s life," he says, such as work, social events, and recreational activities.

Management. "This includes support, coping skills, and other nonpharmacological approaches to management, including diet and exercise," he says. "The program is not branded to any particular drug, it’s branded to itself, so we discuss a wide range of treatment options."

The program has three different audiences with three different teaching modules. "We are located in 10 teaching institutions. The program delivered in the hospitals is intended for everyone from second-year medical students to house staff," says Derinfeld.

The Patient Partners participate in a two-hour teaching curriculum. The director of rheumatology or the medical education director begins the program by delivering a 45-minute talk on rheumatology and arthritis. Then the medical students are divided into small groups. "The Patient Partner describes their life experience with rheumatoid arthritis and takes the students through an explanation of the full body exam. Then the student is asked to perform the exam with the Patient Partner acting as a coach and counseling them on how well they are doing," says Derinfeld. "For many medical students, this is their first hands-on experience with a patient."

Patient Partners also teach community-based providers to assess, understand, diagnose, and treat people with arthritis from a clinical and psychosocial standpoint. "This community program is less intensive and rigorous in its approach to the full body exam. We’re dealing with experienced physicians here who don’t need the attention to fine details that the medical students need," he says.

The final piece of the program is patients teaching other patients. "This is one of the areas the Patient Partners are most effective," he says. "They work with newly diagnosed patients or patients who have had the disease for a while but are still struggling to manage it."

Searle has collected quite a bit of information on the program over the past eight years. Many of the studies have centered around the professional training. "We know from pre- and post-program exams covering attitude and knowledge about arthritis that medical students clearly retain information and confidence after working with the Patient Partners," says Derinfeld. "Their knowledge of the disease increases consistently in the post-exam. On a qualitative basis, we also have heard repeatedly from medical students and practicing physicians that the program will play a major role in how they approach people with musculoskeletal disease."

(Editor’s note: Case managers interested in the Patient Partners program can contact their local Searle representative or write to the Patient Partners Program, G.D. Searle & Company, 5200 Old Orchard Road, Skokie, IL 60077.)