The Consumer Partnership for eHealth (CPeH) today released a framework to improve communication and coordination among patients, families and providers, and to facilitate better health outcomes. Traditionally, care plans have been limited to communication and coordination among providers. Care Plans 2.0 outlines consumers’ vision of the next generation of health and care plans, where patients and families are equal partners in care planning and coordination.

The report, which is endorsed by 20 leading consumer advocacy organizations, has been shared with the Centers for Medicare & Medicaid Services (CMS) and the Office of the National Coordinator for Health Information Technology (ONC). CPeH urged policymakers to draw on these consumer principles as they build the technical capacity to support care planning into future stages of the Electronic Health Record Incentive Program, as well as the delivery and payment reform initiatives overseen by the CMS Innovation Center.

“Every day individuals and families across America coordinate care for themselves and their loved ones. Unfortunately, they often don’t have the tools they need to plan and coordinate effectively,” said Debra L. Ness, president of the National Partnership for Women & Families, which leads CPeH. “Care Plans 2.0 provides critical insights about what patients and families need to achieve their health goals in our modern world.”

Care plans are commonly used to coordinate care among providers, usually with regard to a specific health condition or event. The next generation of care plans must help individuals and their loved ones to play leading roles with their care teams to identify and pursue the health and wellness goals most meaningful to them. The Consumer Partnership’s framework identifies the robust, electronic planning tools that patients and families need to be better informed and supported in their daily efforts to achieve better health and health care.

The Consumer Principles for Health and Care Planning are:

• Health and care plans should be goal-oriented, dynamic tools (not static documents).
• Tools that facilitate health and care planning should enable all members of the care team to securely access and contribute information, according to their roles.
• Health and care plans should identify and reflect the ability and readiness of an individual (and caregiver) to successfully meet their goals, as well as potential barriers.
• Health and care planning and tools should facilitate decision-making and specify accountability.
• Every individual would benefit from health and care planning and tools.

“These principles build on the opportunity for improved coordination and individual and family engagement that health information technology offers. They clearly identify the content, attributes, and features that will make care plans most useful to each member of the care team,” said Joyce Dubow, AARP’s principal for health policy and strategy. “By recognizing the critical role of the family caregiver as a vital member of the team, these principles both promote and support clarity of purpose to assure that an individual’s goals and preferences are honored.”

Instead of today’s static document, Care Plans 2.0 calls for an ongoing care planning process that leverages a dynamic, electronic platform to connect patients, their families, and health care providers, as well as supports and resources beyond the traditional boundaries of health care.

“Many persons with lifelong, frequently severe, disabilities depend upon community-based organizations providing non-clinical services and supports — frequently on a daily or weekly basis. The ideal is to link and integrate these community supports with medical services using an electronic platform,” said Clarke Ross, public policy director at the American Association on Health and Disability. “These principles provide that link.”

Personalized care plans must also reflect an individual’s needs, values, personal preferences and unique circumstances. Care Plans 2.0 integrates linguistic and cultural competencies so that health and care planning adapts to the diversity of America’s patients and families. A person-centered planning process must also consider potential obstacles to achieving the individual’s goal, and arrange for available information or supports to help overcome barriers.

For example, if an overweight individual finds a doctor’s goal to lose 20 pounds daunting, but personally wants to be able to walk five miles without stopping, then the care plan would be designed around that goal — perhaps resulting in weight loss of more than 20 pounds. The care plan would also break down the individual’s goal into achievable steps, such as detailing how many days per week the person should walk and for how long. If the individual prefers to walk on a track rather than a busy street, the care plan would integrate both facility schedule and transportation supports as necessary. When the person achieves the goal, the care plan would be updated accordingly and the individual could identify a new goal.

“Care plans have the potential to dramatically improve our health outcomes. We need to ensure that these tools are used to reduce the existing and pervasive disparities experienced by communities of color by making sure they are culturally and linguistically appropriate,” said Ellen Wu, executive director, California Pan-Ethnic Health Network. “These consumer principles are a great starting point for developing a care planning system that recognizes the needs of all populations.”

Ness added, “Care plans have the potential to address the biggest deficiencies in our health care system: a lack of communication and coordination between patients and their caregivers, and poor outcomes. Care Plans 2.0 gives federal policymakers, providers and stakeholders the blueprint they need to build care plans that meet patients’ and families’ needs and substantially improve our health care system.”

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Care Plans 2.0: Consumer Principles for Health and Care Planning is available here.