Patients newly diagnosed with acute medical conditions are often overwhelmed with their situation. They don’t know what to ask the doctor, how to evaluate the information provided (if they even remember it), or how to arrive at good decisions about their treatment. The Patient Support Corps seeks to change that by giving patients the tools to make more-informed choices about their care. The program launched at the Breast Care Center at the University of California, San Francisco (UCSF) and has since spread to other health care organizations,
The Patient Support Corps trains student interns, many of them pre-med majors, to serve as health coaches (or patient advocates or navigators), accompanying patients to their medical appointments to take notes and record the visits and make sure all patient questions are addressed by the attending physician.
The idea of patient navigators is a relatively recent phenomenon in health care. Harold Freeman pioneered the concept in 1990 in Harlem. Slowly but surely, navigation programs are cropping up elsewhere. Mount Sinai Hospital implemented a patient navigator program in 2010 in its general internal medicine service to help expedite treatment and clarify questions for patients and family. A similar program at Bellin Health Systems, based in Green Bay, Wisconsin, helps ensure the compassionate, sensitive delivery of services for highly emotional conditions like cancer. At Metro Health in Cleveland, the patient navigation program helps patients, especially underinsured ones, through the logistical, emotional, and even cultural barriers that impede their ability to obtain care.
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What’s new in the UCSF program is the focus on enabling patients to make good decisions about their care. While remaining neutral, the coaches make sure that the patients participate in the framing of treatment decisions, the review of available options, the clarification of personal and medical goals guiding the decisions, the identification of relevant information, the reasoning about trade-offs among benefits and harms, and the commitment of resources to the care plan.
Patients learn to reflect critically on medical decisions using a process called SCOPED (situation, choices, objectives, people, evaluation, and decisions). The process was inspired by a conceptual framework called “decision quality” that was developed by professors at Stanford University and the consulting firm Strategic Decisions Group.
Consider the case of Alexandra Teng, who prior to entering medical school had been a coach in the UCSF program but subsequently became a patient facing a difficult decision. (She can be seen describing her coaching work in a presentation to the Mayo Clinic here.) Early one morning, she was discovered unconscious on the floor of her apartment by her roommate. Finding her in cardiac arrest, paramedics administered CPR and rushed her to the hospital, where she underwent three days of medically induced hypothermia to keep her body temperature low and make blood flow to her brain and vital organs.
Alexandra came out of her coma with all her faculties intact. I saw her on day four, and it was truly a miracle. But she was not out of the woods yet. She told me, “I have a big decision to make: whether to have a defibrillator implanted in my chest. It’s OK, though, I know exactly how to make this decision.” She resolved to self-administer the same SCOPED process she had used while coaching patients.
Alexandra began by filling out a SCOPED checklist. Under “situation,” she listed the facts about her condition, including test results suggesting a syndrome that causes irregular heartbeats. Under “choices,” she summarized the available options: wearing an external defibrillator, having a defibrillator implanted, or not having a defibrillator at all. She then listed her “objectives” for her care: preventing future cardiac arrest, minimizing complications, and minimizing cosmetic issues. For “people” affected by or involved with the decision, she listed herself, her family, and her doctors. At the “evaluation” stage, she filled out a table summarizing the forecasted impact of each choice on each objective. For example, she summarized the impact of the “no defibrillator” choice on preventing future cardiac arrest, based on her conversations with her doctors: 30%–46% chance of cardiac arrest by age 40 (possibly lower with medication) and 13% mortality by age 40. After reflecting on these estimates and pondering the cosmetic effects of wearing an external defibrillator, Alexandra decided that she did want a defibrillator implanted.
Now the conversation with her doctors shifted to deciding which of two options would be more effective in meeting her other objectives. The defibrillator could be implanted just under the skin (subcutaneously) or under the muscle. These days physicians tend to prescribe the subcutaneous option because it is easier to maintain (e.g., replacing the batteries). By asking questions about how each of the options would affect her goals, Alexandra learned that the older, sub-muscular option would create less scarring and less protrusion. “I’m in my 20s, I’m dating, and I don’t really want a pack of cards sticking out from my chest,” she said. She also learned there would be slightly more rehabilitation from the sub-muscular procedure, with slightly greater risk of complications. On balance, though, because Alexandra was so young and athletic, her doctors agreed that the risks were low and the cosmetic benefits were substantial. She proceeded with the sub-muscular implant. I saw her shortly afterwards, and it wasn’t visible.
In dozens of studies that we and others have conducted involving thousands of patients, the benefits of SCOPED and related coaching strategies are twofold: they increase patient knowledge, the number of questions they ask, and their satisfaction, and they decrease patient distress, anxiety, decision-related conflict, and regret. (It’s important to note that the program focuses solely on patients making better decisions as they work through an acute health crisis, not on other objectives like increasing revenue or holding down costs — otherwise, patient trust in the coaches would be undermined.)
Other studies have shown that informed and involved patients have better psychological outcomes and in some cases better physical outcomes as well. Recent studies indicate that informed and involved patients are at lower risk for being undertreated or overtreated. And doctors generally express higher satisfaction after consultations with well-prepared patients. Further, in a survey of program alumni at various stages of medical training and practice, respondents indicated that the program had contributed significantly to their development of core medical competencies defined by the Accreditation Council for Graduate Medical Education: patient care, medical knowledge, practice-based learning, interpersonal and communication skills, professionalism, and systems-based practice.
With the efficacy of patient coaches now well established, more health care delivery systems should consider deploying them. College students or recent graduates, many of whom have relevant experience and qualifications for conducting research, formulating questions, and reflecting critically, are ideally suited to work with patients on such tasks. Not only can patients and their doctors benefit from such assistance, but such programs can help develop patient-centered competencies in the next generation of health care professionals.