Clinical care is only one step along the path to helping a patient achieve her optimal state of health. While cutting-edge procedures and innovative therapeutics play a critical role in treating or managing diseases, they typically can’t produce the best possible outcomes on their own.
Patients must be engaged and activated to participate in their own care in order for clinical services to be truly effective. Patient activation, a measure of an individual’s understanding, competence, and willingness to participate in care decisions and processes, is a key component of treatment.
Patient activation is different from patient engagement, according to Judith Hibbard, PhD, MPH.
“Patient activation emphasizes patients’ willingness and ability to take independent actions to manage their health and care,” wrote Hibbard, who is one of the first experts to define patient activation.
“This definition equates patient activation with understanding one’s role in the care process and having the knowledge, skill, and confidence to manage one’s health and health care. Activation differs from compliance, in which the emphasis is on getting patients to follow medical advice.”
Patient engagement, on the other hand, is an umbrella term that includes patient activation, among other patient behavioral issues.
“We use patient engagement to denote a broader concept that includes activation; the interventions designed to increase activation; and patients’ resulting behavior, such as obtaining preventive care or engaging in regular physical exercise,” Hibbard explained.
As the ideal end result of a patient engagement strategy or tool, patient activation - plus care plan compliance - can dictate whether a patient will make a positive behavior change or successfully manage her own health.
Patient activation has been shown to cut costs and improve care outcomes. When patients effectively manage their own health, they are more likely to obtain overall wellness, according to a 2012 article from Hibbard.
And as more healthcare professionals adopt value-based payment models, it will be important to have patients as partners in care.
Clinicians should develop strong patient education skills, shared decision-making strategies, and patient outreach techniques and tools to foster meaningful patient activation.
Identifying activated patients
The first step of any patient activation improvement activity is understanding individual patient activation levels. Many healthcare professionals use the Patient Activation Measure (PAM), a 100-point scale that determines how involved a patient is in her own health.
The PAM was first introduced in a 2004 paper published by Hibbard and her colleagues Jean Stockard, PhD, Eldon R. Mahoney, PhD, and Martin Tusler, MS. The group sought to define patient activation and offer clinicians a tool with which they can identify activated patients.
The measure uses patient-facing survey questions to cover six different patient characteristics:
- Ability to self-manage illness or problems
- Ability to engage in activities that maintain functioning and reduce health declines
- Ability to be involved in treatment and diagnostic choices
- Ability to collaborate with providers
- Ability to select providers and provider organizations based on performance or quality
- Ability to navigate the healthcare system
The PAM survey also includes 22 items, each of which is weighted differently to comprise the 100-point scale. The survey questions cover four central themes, including believing the patient role in activation is important, having the confidence and knowledge necessary to manage health, proactively taking action to maintain and improve one’s health, and staying the course even under stress.
Hibbard and her colleagues also developed a shorthand version of the PAM, reducing the survey to 13 questions. Those survey questions assess:
- Whether the patient believes she is ultimately in charge of her health
- Whether she knows what each of her prescribed medications does
- Whether she understands the nature and causes of her health conditions
- Whether she can find solutions when a new health issue arises
This patient survey can be integrated into the EHR. Many doctors ask patients to complete the survey at the beginning of an appointment, in the waiting room, or using the patient portal before arriving at the clinic.
After collecting patient responses for the PAM, clinicians can make decisions about their patient engagement strategies. Less activated patients may not easily adopt a new engagement technology or a more complex or demanding health behavior change, for example. Simpler engagement strategies will resonate with low-activation patients and allow those patients to experience success, thus further encouraging and activating them.
Arming patients with key health information, education
A patient cannot meaningfully engage in self-management activities if she is not familiar with her conditions, treatments, and other health issues.
A 2018 article published in the Journal of the American Medical Association (JAMA) Open Network showed that even moderate clinician-led patient education can drive activation levels.
The researchers identified hypertension patients with low activation levels and sent them educational letters about their conditions and potential treatment options.
“Information was customized for the patient’s treatment regimen, [blood pressure], and cardiovascular risk factors,” the researchers reported.
“The letter included prior BP readings, identified the patient’s BP goal, quantified the relative cardiovascular risk reduction that would occur with achieving the goal, and provided suggestions for reaching that goal, namely, addition of a thiazide.”
The educational letter also encouraged patients to initiate conversations with their providers about certain treatment options and to provide a providers’ signature as documentation of the conversation.
The written patient education, as well as a phone call to patients reiterating that information, was central to improving activation levels, the researchers found. The intervention also proved feasible for other healthcare organizations and showed potential for application to other chronic conditions.
“The previsit telephone call by a health educator to remind patients to bring the letter and postcard and engage their primary care clinician was relatively easy, involved a health coach, and could be used in primary care to enhance other activities, such as medication reconciliation and preventive care,” the researchers said.
Providers should use clear, simple language when educating patients. They should also use their assessments of patient activation and health literacy to inform their educational strategies – a patient with higher activation and health literacy can absorb more complex information, for example.
Popular patient education strategies can include patient teach-back, the use of written handouts, and patient portal and data access.
Engaging patients in shared decision-making
Shared decision-making, or the practice of engaging patients in selecting a certain treatment path, puts patients in the middle of their own care. By doing so, patients may become more activated in their care management and wellness goals. Shared decision-making gives patients a stake in their treatment and can ultimately improve care outcomes.
A 2018 study published in the American Journal of Surgery found that patient-reported outcomes for hypertension management suffered when care encounters lacked shared decision-making, or when the shared decision-making was not up to a certain standard.
Subpar shared decision-making was tied to higher emergency department utilization, lower use of statins or aspirin, and lower physical and mental health scores, the researchers reported.
These results do not necessarily mean that shared decision-making itself leads to better health. Instead, the study indicated that shared decision-making results in patient activation and self-management, which in turn can result in better health, the researchers explained.
Shared decision-making can be integrated into patient care encounters when providers do the following:
- Assess patient preferences for shared decision-making
- Educate patients about all possible treatment options and how they fit into a patient’s current health status
- Discuss patient values and health-related goals
- Come to a treatment decision with the patient
- Evaluate patient decisions
Of course, adopting shared decision-making strategies will require providers to rework some of their clinical workflows. Most clinicians find themselves pressed for time and have little room for further health discussions with patients.
Use of patient engagement tools such as paper or digital decision aids will help providers save time during the patient education process.
Shared decision-making should take into account patients’ values, according to Corey Siegel, MD, an associate professor of medicine and the director of the inflammatory bowel disease center at Dartmouth Hitchcock.
“We really need to understand what patients are most fearful of and most concerned about and what they want to talk about, because otherwise it becomes a very provider-centric program as opposed to a patient-centric program,” Siegel said in an interview with PatientEngagementHIT.com.
After assessing the preferences and concerns of his ulcerative colitis patients, Siegel was better able to target patient education, decision aids, and subsequent shared decision-making strategies to each individual’s needs.
Siegel and colleagues determined that patients wanted to know more about the complications of their ulcerative colitis as opposed to the often negative side effects of the possible treatments. This shaped the patient education Siegel delivered and facilitated more meaningful shared decision-making, he said.
“The idea is really to understand what their preferences are and have them make a decision that matches that preference, and that physicians and providers help guide them, too,” Siegel explained.
Supporting patients outside of the office
Since patients spend much more time outside the clinic than in it, providers should keep communication channels open and ensure patients remain activated in their care.
Health IT can play an important role in this. Patient portal messages and other digital patient outreach tools allow providers and patients to message back and forth to answer questions, check in on new interventions, and mitigate other health concerns.
They also provide an opportunity for providers to give a personalized nudge to a patient who may be less activated in self-management.
Text messages or phone calls can remind patients to receive preventive care, take a certain medication, or adopt a new healthy behavior.
Medication adherence apps have proven effective at improving care outcomes for patients, for example.
At the University of Alabama Birmingham Medicine (UAB), automated phone calls helped increase the rate of patient appointment scheduling, according to UAB’s transitional care coordinator Joann Clough.
Prior to implementing automated appointment and follow-up scheduling calls, Clough and her team were overwhelmed with patient outreach. Manually calling patients is time-consuming, and when a patient didn’t answer, it added more work for the call center team, Clough explained in an interview.
“The schedulers no longer have stacks of paper on their desk of patients they're trying to reach, and the frustration of not being able to reach patients is pretty much gone,” she reported. “They have so much time back because automation does all the hard work for them.”
This excess time allows call center professionals to focus on more complex patient issues that cannot be solved with an automated phone call. Additionally, automation has allowed UAB to reach out to more patients, ensuring they receive the preventive or follow-up care they need.
It will be important for clinicians to balance their interpersonal skills with automated patient outreach technology. Although automated tools can make it easier for providers to reach more patients quicker, a personal connection via patient portal message or personal phone call can also be key for motivating patients.
Appointment reminders, medication adherence nudges, or drug refill notifications may be good fits for automated technology, while evaluation of a healthy behavior change, or attending to irregularities observed using remote patient monitoring technology may be best addressed with a personal message.
Assessing patient activation levels, patient education, shared decision-making, and patient outreach each on their own are key patient engagement strategies. Taken together, these strategies can help providers increase patient activation levels.
As patients become more empowered in their care, they are more likely to adopt new healthy behaviors and engage in self-management, ideally improving care outcomes and cutting healthcare spending.