A little knowledge can be a precious thing, especially when it comes to health care management. According to researcher Judith Hibbard, it’s an essential component of what she calls “patient activation”: having the knowledge, skills and confidence to manage your own health and health care. Hibbard has led the field in developing ways to measure just how activated patients are, and to use that information to more effectively tailor interventions .
Hibbard and her colleagues developed a 13-item Patient Activation measure (PAM), a questionnaire clinicians can use to assess a patient’s activation level. It categorizes people into one of four levels, with those at Level One being the least activated, and those at Level Four having the confidence and skills to face whatever comes their way.
Hibbard explains that the PAM is being used to “help clinicians better meet patients where they are. People who don’t have a lot of confidence, or who have failed in managing their health or health care, can feel pretty discouraged and overwhelmed by the whole business of taking care of their health.” The process, she says, helps patients “understand what they’re brining to the interaction. And clinicians can develop care plans that are much more appropriate, helping the person or family to take small steps that are achievable.”
Health coaches have found the PAM, or a similar tool, the Patient Activation Assessment, to be very useful in their work. According to Risa Hayes, a coach and program manager in Colorado, her group uses the tool in two ways, measuring not only where patients are at the start of an illness, but where they are after participating in coaching. Her colleague Hilarea Amthauer says that coaches use the PAM to “talk to patients about their goals once they leave the hospital. It might be working in your garden, going to your grandson’s basketball game, or just not going back to the hospital.” With those goals in mind, clinicians can begin to understand just where a patient is—and where she’d like to be.
Hayes said it could be that a patient “does not have a lot of positive emotion, and is not ready to start setting a lot of goals. Standard operating procedure is to give everyone sheets of paper, lots of instructions, and phone numbers. It’s just useless for someone whose PAM is a Level One.”
Instead, patients and clinicians need to establish small goals that can be achieved, and that are meaningful in the patient’s life. From there, patients gain the confidence they need to achieve higher activation scores.
And that, Hibbard’s research shows, can lead to better health and health outcomes. She has found that people are more likely to get preventive care, screening, and immunizations; to eat a healthy diet; and to exercise regularly. Different indicators, such as body mass index and cholesterol levels, are more likely to be in the normal range.
Having increased knowledge and confidence is especially important for older patients who have multiple chronic conditions, those nurse Elaine Cannon calls “the sickest of the sick.” In her experience as a visiting nurse in Rochester, New York, Cannon says her role has changed. “As a nurse, it was always a “do-to” type position. In coaching, you lead the patient to take more ownership of the situation.”
Melissa Wendland, of the Finger Lakes Health Systems Agency in upstate New York, says that patient activation changes the health care dynamic. “Patients are being supported in their autonomy. They’re recognizing their competencies. It’s a very different approach for health care.”
Danny Sands, a physician who founded the Society for Participatory Medicine, concurs. “You have to be a participant in your own health care—it’s not a spectator sport. When patients are more engaged in their health, they follow the plan, they have better outcomes, and everyone is happier.” Hibbard suggests that those looking to be more engaged try a few simple things. “Break things down into smaller steps. Take a focus on one thing at a time, and don’t feel overwhelmed by all [clinicians] are asking you to do.”
Mary Minniti of the Institute for Patient- and Family-Centered Care suggests that any time you leave a doctor’s appointment, you should be able to answer three questions: “What’s the problem, medically? What can I do about it? And are there danger signs or things that mean I should get back in contact with you? If you can’t answer those three questions by the time you leave the office, you need to know it’s not a failure on your part, or the clinician’s part—it’s the system’s fault. It’s valid to say, ‘I’m not ready to leave yet. Who besides the doctor can help me to know what I need to know?’”
key words: patient activation measure, patient activation, care transitions, self-management