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RESOURCES - Leadership Guide

Section 16 - Campaign-related Issues

Patient/Family-centered Care and Chronic Care are two important issues that will be explored by Remaking American Medicine. With that in mind, we felt it would be useful to refer coalitions to several organizations that are considered leaders in those fields, as well as to additional resources in those areas.

Patient/Family-Centered Care

Child being examined

Patient-centered health care is defined as quality health care achieved through a partnership between informed and respected patients and their families, and a coordinated health care team. Patients and their families manage their health care in partnership with a coordinated team that recognizes, respects and acts upon their individual goals, needs, values, preferences, cultural wishes, and/or other self- identified factors.

According to the Foundation for Accountability, a person-centered health system has four dimensions:

Health: The system will help most people understand, be responsible for, and be able to take care of their own health to the maximum degree possible.

Health care: The system will make available the most effective professional and institutional resources to assist people when they can no longer manage their own health without help. The
system will embrace and promote the principles of 'patient-centeredness' - self-care, personalization, transparency, redesign, quality, justice and control.

Financing: Every individual and organization - from the patient to the medical school to Medicare - will accept responsibility to use expensive resources appropriately and efficiently.

Citizenship: Society will embrace an explicit consensus of our responsibility to each other - and the limits of that responsibility. 2

The Institute for Family-Centered Care (IFCC) is dedicated to this issue. It defines family-centered care as an approach to health care that offers a new way of thinking about the relationships between families and health care providers. Family-centered providers recognize the vital role that families play in ensuring the health and well-being of infants, children, adolescents, and family members of all ages. Family-centered practitioners assume that families, even those who are living in difficult circumstances, bring important strengths to their health care experiences.


2 - Innovators and Visionaries: Strategies for Creating a Person-Centered Health System, September 2003.

3 - IFCC Web site (

Family-centered practitioners acknowledge that emotional, social, and developmental support are integral components of health care. A family-centered approach to care empowers individuals and families and fosters independence; supports family care giving and decision making; respects patient and family choices and their values, beliefs, and cultural backgrounds; builds on individual and family strengths; and involves patients and families in planning, delivery and evaluation of health care services. Information sharing and collaboration between patients, families and health care staff are cornerstones of family-centered care. 3

The Institute for Healthcare Improvement (IHI) is working to identify best practices and promising system changes that enable patient-centered care. IHI is focusing its work in three areas that it believes will contribute to a complete framework for a patient-centered health care system. Specifically, IHI will work to articulate changes that: enable health
care providers to reliably meet the needs and preferences of patients; enable fully informed, shared decision-making; and include patients and their loved ones on health care improvement and design teams.

For more information about this initiative, log on to the IHI Web site.

Tip: On IFCC's Web site, one can find a wide range of excellent resource guides, videos, and publications as well as potential local Champions of Change. Click on "Special Topics" and learn about the exemplary work of Family Resource Centers in Minneapolis, St. Paul, Philadelphia, Seattle, Boston, Phoenix and Chicago, among other cities.


Tip: The National Health Council, a nonprofit association of national health-related organizations has Putting Patients First®, a public educational program designed to empower consumers and patients. Public service ads are available to coalition members and the Council expects to unveil a complete new set of communications tools in the summer of 2005. For additional information, log on to

"What is good for families and patients is often good for the health care system as well. Family-centered care is a winning proposition for all concerned."

-- Beverley Johnson, president and CEO
Institute for Family-Centered Care, Pediatric Nursing




































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