Consumer and Family Engagement in Health


In the U.S., 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. 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. 

Consumers of health care and their families need support to better engage with health insurers, providers, and health systems. Consumer goals and preferences should always be considered in the process. 



Making consumer and family engagement a priority

The public and private sectors should prioritize consumer and family caregiver engagement and support in health care in all settings, including care provided in home settings. Policymakers should address the importance of consumers and family caregivers playing an active role in their health care. They should have access to credible, culturally relevant, and language-appropriate information and support. 

Active participation in health and health care

Policymakers and the private sector should encourage and empower individuals 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 clinicians’ 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 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 barriers to caregiver engagement. Individuals and their families who do not actively engage in their health care should not be penalized. 

Provider education and training

Government bodies and the private sector should fund provider education and training on consumer and family caregiver engagement. Training should: 

  • be accessible, 
  • be culturally and linguistically appropriate, 
  • provide information on culturally competent person- and family-centered care, and 
  • actively encourage consumer input and family caregiver engagement. 

Consumer information on price, quality, and outcomes of health care

All levels of government and the private sector should provide consumers and their families with the information necessary to make informed choices about their health care. This should include decisions about treatment options. 

Assistance for self-advocacy

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. It 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, preferences, and outcomes should be elicited and become part of the person’s care plan and treatment options. 


Government and the private sector should design health technologies that can support positive changes in health behavior. Technologies should be easy to use, accessible, and tailored to individuals’ interests and goals (for more information, see Consumer Protections). 


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. 

Shared decisionmaking

All levels of government, the private sector, and individuals should collaborate to develop policies that promote shared decisionmaking between consumers, family caregivers, and their health care team. 

Consumer and family caregiver engagement definition and quality measures

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. 

Best practices

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 to modify consumer behavior.