To achieve good health outcomes, consumers and their family caregivers must understand how to engage effectively with medical systems and community-based resources that support and promote health. Formal health systems are shifting more decisions and costs to consumers and their family caregivers. They must be equipped with the knowledge and skills to work successfully with these systems to maintain or improve health.
Definitions of consumer and family engagement vary. This chapter refers to providing consumers and their family caregivers with the knowledge, skills, and other tools needed to play an active role in maintaining and improving health and well-being. It also means helping consumers and family caregivers overcome structural and personal barriers to engaging with formal and informal systems of care.
Maintaining cognitive health is a key component of healthy aging. There is emerging evidence that certain lifestyle choices can improve cognition. These include physical exercise, good nutrition, social interaction, stress reduction, healthy sleep habits, and mental engagement. They can also potentially reduce the risk of cognitive impairment and related forms of dementia. As the U.S. population ages, the costs of providing care and services to individuals with cognitive decline, related dementia, or both will likely increase. This significantly impacts the health and quality of life of individuals and their families. And it strains health resources. Individuals need assistance from health care, government, and private entities to maintain and improve cognitive health throughout their lifespans.
Finally, a growing number of consumers now have access to their health information through electronic health records. And large amounts of information on all aspects of health care are available online. These resources may help consumers and family caregivers make better health care decisions. At the same time, decisions concerning treatment options, provider networks, and insurance coverage have become more complex. They now demand higher-level understanding and engagement from consumers and family caregivers. Some consumers face challenges that prevent them from actively advocating for themselves. Consumers with low health literacy, cognitive impairment, and those who are ill, in pain, or experiencing stress from a health condition may not be in a position to engage actively in this process. In addition, accessing transparent information on price and quality performance remains challenging. Many health care decisions (e.g., whether to seek health care and where to go for care) can have substantial financial consequences for individuals and the health care system.
To promote and encourage greater engagement from consumers, transparent information on price, quality, and outcomes must be available in ways that are accessible to consumers and families. The infrastructure should be in place to help consumers and family caregivers understand how that information can help them make better choices. Some individuals need help to better engage with providers, health care systems, and health insurers. A high-quality health care system adapts to the individual needs of consumers and their families. Family caregivers or others who take on the role of advocating and caring for people unable to advocate for themselves require support systems. Consumers’ health goals, preferences, and outcomes should be elicited and become part of their health care plan and treatment options.