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Progressing to a Person-Centered Infrastructure

Evidence suggests that health care delivery systems account for only about 10-20 percent of health outcomes.5 On a daily basis, most individuals do not encounter the health care delivery system even when managing their health and care. When individuals interact with the delivery system, they are often more a recipient of health care and long-term services and supports, than informed, active partners who collaboratively make decisions with their comprehensive care team. This dynamic limits the opportunities for individuals to manage their own health and to share in health care decisions.

A more person-centered vision is vital to improving health and health care, particularly since individuals' motivations and actions have a great impact on health behaviors and outcomes. A person-centered health system enables individuals to access wellness and health care services and information, enabled by user-centered technology that reflects their needs, values, and choices, and supports both self-care and meaningful interactions with their care providers with seamless transitions between these activities.

In a person-centered model, the boundaries become more porous between what occurs inside and outside of the health care system, by promoting increased information flow and using technology that allows remote interactions independent of physical location and time constraints.

Individuals perform on their own some of the activities that traditionally occur only in formal health care settings (e.g., monitoring blood pressure, tracking body mass index). An increasing number of individuals want the ability to use technology to track and improve upon their health goals, and want technology to be helpful and easy to use.

Market innovations and policies that allow individuals to move and combine information from various sources - whether that information is stored in mobile applications, EHRs, or patient portals, into a single information source to improve health and wellness management - will greatly expand individuals' capability to engage in self-management and contribute to improvements in health care, research, and technology innovation.

Empowering and supporting individuals and their families and caregivers to manage their health and partner in their care can be a complex and time-consuming undertaking. Relationships and cultural expectations among providers and individuals will evolve as each learn and practice new ways to communicate, collaborate, assume changing roles as part of the care team, understand new responsibilities, and discover how best to take advantage of improved health IT and care options.

It will take the collective work of individuals, providers, and community organizations to build and maintain meaningful partnerships to improve health. Federal health IT strategies can help support this endeavor. Many individuals are ready and eager to use highly advanced technologies and interact regularly with providers and others to accomplish their health goals.

The federal government has a dual responsibility to ensure that momentum supports this empowerment, and does not leave others behind, which could expand existing inequalities and resource scarcities. Collaboratively, stakeholders should follow practices supported by federal actions to prevent widening potential "digital divides" of health IT development, availability and adoption that could result in exacerbated socioeconomic challenges.

Shared efforts among public and private entities should create an environment that fosters the availability of culturally, linguistically, and technically appropriate tools and materials, reflecting diverse preferences that can help advance individuals' ability to manage their health and partner in their care. As the capacity for health IT tools and electronic health information grows and becomes more commonplace, a concerted effort by government and private entities should ensure technology is designed for all usability levels, fully accessible to individuals with disabilities or other potential limitations.

For the health system to evolve its attention and actions towards stronger relationships that rely on technology to facilitate information exchange and use, the person-centered actions will require more than the critical step of welcoming individuals' health decision-making and self-management. Stakeholders and federal government polices need to reflect evolving expectations and effectively manage risks to meet new demands by information users for nimble technology and expanded information sources.

In this way, the health IT infrastructure can support individualized care, independent health decisions, and improvements to population and public health. The federal government's role in this evolution anticipates implementing policies to integrate and sustain new approaches to health and social services and supports, approaches that are reinforced by alternative reimbursement models supporting better outcomes, wellness, and prevention.

This person-centered infrastructure will require culture shifts and technological adaptations that strengthen and make clear the connection between health care providers and community supports and services.

A key foundation of a person-centered infrastructure is a strong trust environment, where individuals, and those acting on their behalf, contribute information with a clear understanding of the risks and rewards associated with sharing information. A strong trust environment will stimulate opportunities for individuals and their caregivers to define and update their preferences and values.

Individuals require confidence that custodians of their health information take every necessary measure to keep their information appropriately private and secure. At the same time, individuals expect that health information about them will be available for their care when and where they need it, and they will derive benefits from the information shared.

In a person-centered infrastructure, the term "health IT" includes a wide range of continually emergent products, technologies, and services, including but not limited to modular EHRs, mobile and telehealth technology, cloud-based services, medical devices, integrated remote monitoring and virtual visits, risk-modeling and other predictive algorithms, assistive technologies, application program interfaces, and sensors. Health IT encompasses technologies that researchers can use for biomedical analysis, and tools and computational power for analyzing large and complex datasets.

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