A growing number of consumers now have access to their health information through electronic health records, as well as to increasing amounts of information on all aspects of their care. On the one hand, this information may help consumers and family caregivers make better health care decisions. However, decisions concerning insurance coverage, provider networks, and treatment options are complex and require higher-levels of understanding and engagement by consumers and family caregivers. Consumers with low health literacy or cognitive impairment; those who are ill, in pain, or experiencing stress from their health condition(s); and those who are simply not interested, may not be able to actively engage in health care decision-making.
Many health care decisions—such as whether to seek health care and where to go for care—can have significant financial consequences for individuals and the health care system. And one of the most challenging tasks for consumers and their families is obtaining accurate, user-friendly information about the cost and quality of treatment options in a format that is meaningful for decision-making.
To promote and encourage greater consumer engagement, transparent information on price, quality, and outcomes must be available in ways that are accessible to consumers and families. Infrastructure should be in place to help consumers and family caregivers understand how that information can help them make better choices. Public and private entities should help consumers and their families with the support they need to better engage with health insurers, providers, and health systems. Consumer goals and preferences should always be considered in the process.
Although definitions of consumer and family engagement vary, for purposes of AARP public policy, consumer and family engagement means providing consumers and their family caregivers with the knowledge, skills, and other tools they need to play an active role in maintaining and improving health and well-being and helping consumers and family caregivers overcome personal and structural barriers to engaging with formal and informal systems of care. To maximize consumers’ health outcomes, it is essential for them and their family caregivers to understand how to engage effectively with medical systems as well as with community-based resources that support and promote health. As formal health systems shift more decisions and costs to consumers and their family caregivers, it is important that they are equipped with the knowledge and skills they need to successfully work with these systems to maintain and improve health.
It is important to note that, for a variety of reasons, not everyone has the capacity for or interest in engaging in activities that maintain, improve, or support their health. These individuals should not be penalized for this. Rather, public policymakers and private entities with interest in the field should work together to identify promising strategies to help people overcome barriers to engagement.
PROMOTING CONSUMER AND FAMILY ENGAGEMENT IN HEALTH: Policy
Making consumer and family engagement a priority
The public and private sectors should promote and support policies that make consumer and family caregiver engagement a priority. Policies should address the importance of consumers and family caregivers playing an active role in their health care as well as their need to have access to information and support.
Individuals as active participants in their health and their health care
Consumers should be encouraged and empowered to maintain—and where possible—improve their health. Individuals, particularly those with chronic conditions, should have access to and participate in relevant health self-management programs. Family members should be included as appropriate. Individuals have an important role in maintaining their health, to the degree they are able, by pursuing a healthy lifestyle, using preventive services and health screenings, following clinician’s advice, and playing an active role in health care decision-making.
The public and private sectors should fund and support education about health self-management programs to empower consumers and provide them with the skills they need to establish and meet their personal health goals. Self-management programs should be tailored so that vulnerable populations disproportionately affected by certain health conditions have the opportunity to participate.
Consumers should have the right to choose when and how they want to participate in their health care, including the option to designate a family caregiver as an advocate. The public and private sectors should ensure that privacy policies are not a barrier to caregiver engagement. Individuals and their families who do not actively engage in their health care should not be penalized.
Funding provider education and training
All levels of government and the private sector should fund provider education and training on consumer and family caregiver engagement. Training should be accessible, culturally and linguistically appropriate, provide information on culturally competent person- and family-centered care, and actively encourage consumer input and family caregiver engagement.
Consumer-facing information on the price, quality, and outcomes of health care
Providing assistance to consumers to self-advocate
Policymakers and the private sector should provide individuals and their families with the support they need to advocate on their own behalf in interactions with providers, health care systems, and health insurers.
A high-quality health care system should adapt to the individual needs of consumers and their families and should build supports for family caregivers or others who take on the role of advocating and caring for people unable to advocate for themselves. Consumers’ health goals, preference, and outcomes should be elicited and become part of the person’s care plan and treatment options
All levels of government and the private sector should design health technologies that lead to sustained changes in health behavior. Technologies should be easy to use, accessible, and tailored to individuals’ interests and goals (see also Chapter 11, Financial Services and Consumer Protections - Regulation, Monitoring and Enforcement—Privacy.)
All levels of government and the private sector should conduct research on the value and impact of consumer and family engagement in health care design transformation, shared decision-making, outcomes, patient-reported measures, and cost/spending. Research should focus on the various aspects of the health care system and on older adults of all races and ethnicities. The findings should be made available to the public and easy to understand.
Consumer and family caregiver engagement definition and quality measures
All levels of government and the private sector should work with a variety of stakeholders, including consumers, to develop consistent definitions of consumer and family caregiver engagement. Public and private-sector efforts to support consumer and family engagement may include the development and use of measures to identify needs and target resources. Measures should be meaningful to consumers, take into consideration personal health goals, be person - and family-centered, and reflect consumers’ medical and social needs.
Federal and state governments should take the lead in disseminating findings from health behavior modification research to health care systems and clinicians. Emphasis should be placed on disseminating promising practices and focusing on personal goals and purpose as a way to modify consumer behavior.