According to the research, factors such as age, ethnicity, level of education, level of income, and personal perspectives and beliefs about their role in managing their healthcare may affect their ability to engage with their providers in shared decision making. The severity of the disease, cultural beliefs and social attributes of the patient, along with the aspects of the type of prescribed therapeutic treatment are of equal importance and could impede their ability to gain the necessary skills to play an active role in their medical journey. As a result, clinicians and delivery systems need to understanding these issues to actively engage patients with diverse backgrounds and socioeconomic status.
There is a growing emphasis on health literacy. Consumers cannot be informed participants if they can’t understand the information provided to them. Many studies have indicated that patients with poor literacy skills receive less preventive care; have less knowledge about chronic illnesses; more poorly self-manage asthma; use healthcare services at a higher rate; and, have worse outcomes on a variety of measures than patients with greater literacy. It is essential to screen for literacy issues and ensure videos and literature with pictures written at a fifth grade level are available in their preferred language.
Studies have identified the role of several characteristics of healthcare professionals and care teams that affect a patient's willingness to actively participate in their healthcare journey. Factors include these:
The RAND Corporation and co-authors, after a three-year study of eight primary care sites across the U.S., discovered three main barriers to implementing shared decision making, namely, overworked physicians, insufficient provider training, and clinical information systems that failed to track patients throughout the decision making process. According to the researchers, overcoming these barriers may require payment reforms and incentives for shared decision making to take hold.
Enabling factors connected to the organizational infrastructural features, availability of technological resources, human resources characteristics, and service processes are demonstrated as essential factors which may sustain or hinder a patient's engagement in their own care. Particularly important is organizational culture; resource availability; an institutional vision open to fostering the patient’s active participation; and, human resources education in this matter.
Organizational factors that impede patient engagement can include these:
Lay community and societal factors such as family characteristics, informal caregivers, peer networks, and society as a whole can facilitate or obstruct patient engagement. Social media and online communities of peers with the same illness can all play a role. Support groups are well known for their positive effects on those with chronic illnesses. Lay educational classes such as Chronic Disease Self-Management Education from Stanford allow lay instructors to teach chronic disease self-management classes. This approach is highly successful in teaching patients how to manage their symptoms and can improve quality of life and reduce healthcare costs.
A Patient Health Engagement model was based on the assumption that patient engagement is a developmental process involving a patient’s capacity to plan real-life projects and to be goal-oriented—even while living with a disease. The concept of engagement assumes the patient makes a personal choice to change their attitude toward the healthcare system from passive to that of an active partner and becomes a co-pilot with the provider on their healthcare journey. It is a function of the patient’s evolving adjustment and resilience to their illness. According to this model, the patient passes through the phases noted in the table below (Graffigna & Barello, 2018).
| Phases | Description |
|---|---|
| Blackout | The patient feels overwhelmed and shocked. They are emotionally fragile and they appear passive and withdrawn. They prefer to rely on others (such as, caregivers, HCP, etc.) to make significant decisions and take actions about their healthcare. |
| Arousal | The patient has acquired first-hand knowledge about their health condition, and they are starting to cope with it, but they appear hyper-vigilant, anxious, overreactive, very focused on the sick body. |
| Adhesion | The patient has accepted their condition, but they are still unable to navigate unexpected events related to their illness or their health care context. They easily revert to arousal or blackout. Focus is on the person as a patient. |
| Eudaimonic Project | The patient seems balanced; it seems they have fully accepted their health condition. They are able to play an active role in their health and the health of others. Focus is on the person as a person with connections to many aspects of daily life, not only their role as a patient. |
The model theorizes possible engagement trajectories where patients move backward and forward according to critical events in their life and the course of their disease. The model lays out distinct ways to interact with and engage patients in decision making, depending on what phase the patient is passing through. It can inform the provider of the best way to engage the patient. Developing a psychological approach is a new area of research that addresses why patients may choose to engage or not to engage in their healthcare.
Authored by Cindy Ebner, MSN, RN, CPHRM, FASHRM
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