All day, every day, people make medical choices that have repercussions for common yet dangerous conditions like asthma, heart disease and diabetes. Although chronic disease takes a greater toll [PDF] on people with lower socioeconomic status, chronically ill patients are part of every community. In California and across the country, public health officials and physicians keep searching for the best way to get patients involved in improving their health.
Some patients naturally want to be involved with their care. Other times it's doctors and nurses who must try to encourage more engagement by their patients. “Whether to exercise or change their diet, take medication," Dr. David Thom told me recently, "those are the bread and butter decisions that go into primary care."
Thom, director of research in the UC San Francisco department of Family and Community Medicine, is launching a new study, exploring how patients make decisions when they work with a “health coach." Often health coaches are trained medical assistants who join the primary care team. “Our belief is that health coaches are going to have a fairly different relationship with patients than providers do,” he says. “Their role in helping the patients make decisions will be clearly different than the providers’ role.”
For example, coaches may help patients prepare questions in order to make the best use of limited face time with their doctors. Coaches might also accompany patients to appointments or help them navigate between multiple departments in a medical center.
Many coaches are bilingual and for Thom's research some are already trained and in place. Mission Neighborhood Health Center and Southeast Health Center, both part of the healthcare safety net in San Francisco, will be the first sites studied. Coaches meet with patients and sometimes patients’ families, follow up on the phone, and sometimes sit in on appointments. They have access to the doctors and other members of the primary care team.
As part of the Affordable Care Act, the federal health care overhaul, patient engagement is linked to reimbursement for providers. Hospitals and outpatient providers alike have new incentives to successfully educate their patients and demonstrate that their patients are participating in their own treatment. With a two-year grant from the newly formed Patient-Centered Outcomes Research Institute the UCSF researchers hope to discover which elements of coaching improve patients’ abilities to make medical decisions, improve clinical practice and improve the patient's experience of care.
And it's not just safety net patients who can benefit from coaches. In the heart of Silicon Valley, researchers studied a group of patients to determine how confidently patients were engaged in discussing their care with their healthcare providers.
Nearly all the patients in this study by the Palo Alto Medical Foundation (PAMF) were well-educated and had health insurance. More than a third had a chronic illness. These patients could easily envision asking questions and discussing preferences with their doctors. About 70 percent said they preferred a shared decision-making role, one in which patients and doctors contribute equally to medical decisions.
But drill down a bit more and that shared decision-making gets more difficult. Only 14 percent of patients said they would "voice disagreement" with their doctor if their own preferences conflicted with the doctor's recommendations.
According to PAMF researchers, patients want to participate with their physicians in decision-making, but worry they might be perceived as “difficult” and that their care in the future would be compromised.
Forget the future -- patients' care might be compromised right now, if they disagree with a recommended treatment, but say nothing. "Reluctance to express disagreement in the office may correlate with poor adherence outside the office," the researchers noted. "The findings point to the need to test interventions that explicitly allow patients to voice disagreement with their physicians."
Eve Harris is a Bay Area writer. Check out her health blog, A Healthy Piece of My Mind.