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Useful Links

Explore the variety of websites for organizations and programmatic initiatives that are of particular interest to clinicians:

Professional Organizations – Supporting Patient- and Family-Centered Care

American Academy of Pediatrics
AAP is dedicated to improving the overall health of infants, children, and adolescents. It offers information on a variety of health care topics, several related to the practice of patient- and family-centered care. IFCC partnered with the AAP to develop a policy statement, Family-Centered Care and the Pediatrician's Role. In addition, the AAP states clearly that family-centered practice is a key component in the delivery of medical care for children with special needs in their Medical Home Policy Statement, and on the website for the National Center for Medical Home Initiatives.

American Association of Critical Care Nurses
AACN provides leadership and resources to their members to improve health care for critically ill patients and their families. Core concepts of patient- and family-centered care are integrated throughout their practice guidelines. The AACN has developed the Synergy Model for Patient Care and integrated it into their certification credentialing program. The Synergy Model views patients and families as active participants in care and decision-making.

Child Life Council, Inc.
The CLC is the leading membership association serving child life professionals as they empower children and families to master challenging life events. CLC was established in 1982 to address the professional, programmatic, and educational needs of child life practitioners. Child life specialists are skilled in providing developmental, educational, and therapeutic interventions for children and their families under stress, recognizing family strengths and individuality, and respecting different methods of coping. They support the psychosocial development of hospitalized children and provide children with developmentally appropriate activities that help them adjust to the hospital environment, prepare for medical interventions and procedures, and cope with their hospitalization and illness. Child life practitioners partner with families and other health care providers to support the resiliency and enhance the health and well being of infants, children, and youth.

Children's Hospice International
For more than twenty years, this organization has been dedicated to promoting family-centered pediatric hospice services. Resources, personal stories, and information about demonstration projects are included in the site.

Collaborative Family Healthcare Association
The mission of the CFHA is to develop a better healthcare model through collaboration among family medicine practitioners, family therapists, patients, and their families. Educational resources and training opportunities are listed on the site. A founding director of CFHA created a journal, Families, Systems, and Health, that focuses on innovative models of collaboration among families, health professionals, and mental health teams.

Emergency Nurses Association
The ENA has been actively promoting family-centered emergency care and the site includes their position statement, Family Presence at the Bedside During Invasive Procedures or Resuscitation.

Health Canada
Health Canada, the federal agency charged with improving the health of Canadians, promotes patient- and family-centered health care. Their resource, Family-Centred Maternity and Newborn Care: National Guidelines, provides a helpful model for maternity care.

National Association of Emergency Medical Technicians
NAEMT is an international membership organization representing emergency technicians, paramedics, and others working in emergency care. In 2000, NAEMT in partnership with the Emergency Medical Services for Children published a series of documents on family-centered emergency care.

Society of Critical Care Medicine
The mission of the Society of Critical Care Medicine is to secure the highest quality care for all critically ill and injured patients. The Society of Critical Care Medicine is the only professional organization devoted exclusively to the advancement of multiprofessional intensive care through excellence in patient care, education, research, and advocacy. Each year at the Society of Critical Care Medicine's Annual Critical Care Congress, the society's Patient & Family Committee awards the Family-Centered Care Award. The award recognizes innovation that improves the care provided to critically ill and injured patients and their families.

Society of Pediatric Nurses
This organization offers resources, educational opportunities, and current policy information for nurses and other interested professionals working in pediatrics. The publication, Family-Centered Care: Putting it into Action: The SPN/ANA Guide to Family-Centered Care provides guidance developed collaboratively with the American Nurses Association.

Training and Education

American Academy on Communication in Healthcare (AACH)
AACH is dedicated to research, education, and professional standards in patient-doctor communication, with the goal to change the practice of medicine by helping clinicians and patients, and learners and teachers relate more effectively. AACH fosters best patient care by advocating a relationship-centered approach to health care communication, education, and research. Promoting collaborative relationships and incorporating core values of respect, empathy, and genuineness in human relationships are key components.

Healthcare Communication Project, Inc.
This non-profit organization based in New York state, offers a variety of practical resources for patients, families, and others who want to improve the physician-patient relationship and become active in their own healthcare. The Healthcare Communication Review is their semi-annual newsletter, written for patients and professionals offering practical advice; philosophical discussions; reviews of current research; and patient and professional perspective of healthcare.

Institute for Healthcare Communication
Formerly, the Bayer Institute for Health Care Communication, this organization provides education and resources to promote partnerships between patients and providers in clinical practice. The site offers many resources for professional development including, an Annotated Bibliography for Clinician Patient Communication to Enhance Health Outcomes as well as case studies and training resources.

Institute for the Study of Health and Illness at Commonweal
ISHI was founded and is directed by Rachel Naomi Remen, MD. It is an education and training center for physicians who want to strengthen or renew their commitment to the values that inspired them to practice medicine. Also offered is an outreach program called, Finding Meaning in Medicine, which promotes the creation of small local communities of physicians, medical students, nurses, and others who come together to explore the deeper meaning of health care practice.

National Center for Cultural Competency
This center's work is focused on increasing the capacity of health and mental health programs to design, implement, and evaluate culturally and linguistically competent service delivery systems. They offer numerous and valuable online resources including self-assessment tools and publications as well as on-site training and education.

Patient Decision Aids
This site is part of the Ottawa Health Research Institute and was created to assist clinicians and patients make difficult health care decisions. The program is research-based and the site offers online tools, clinician training programs, research tools, and other resources.

Patient Safety and Quality Healthcare
This online journal offers numerous articles highlighting the role of patients and families in patient safety and identifying strategies and benefits.

Research and Training Center on Family Support and Children's Mental Health
Based at Portland State University, Portland, Oregon, this organization concentrates on supporting community-based, culturally competent, and family-centered services for children with mental, emotional, or behavioral disorders and their families. For over two decades, the Center has actively promoted partnerships among families, providers, and policy makers in research and evaluation and offers practical tools and resources on the site.

Quality Improvement

Center for Medical Home Improvement
A "medical home" is a model for providing comprehensive primary care to children with special health care needs. CMHI has set out to engage families and professionals in quality improvement to build and enhance medical home practices. The site has practical assessments and resources for providers in community practices and families serving on improvement teams including the complete Medical Home Improvement Kit with measurements, strategies, and A Guide for Parent and Practice "Partners" Working to Build Medical Homes for CSHCN.

Clinical Microsystems
Funded through the Robert Wood Johnson Foundation, several centers within Dartmouth-Hitchcock Medical Center, in New Hampshire, have been collaborating on exploring health care improvement through the lens of the clinical microsystem model. Their belief is that the quality of an entire organization is no better that the care received by individual patients and families within an organization's discrete units. The website offers information and resources and includes examples of how different organizations across the world are applying the model.

Improving Chronic Illness Care
As a national program of the Robert Wood Johnson Foundation, ICIC is dedicated to improving the experience of chronic illness care for patients and their families. Based at the MacColl Institute for Healthcare Improvement in Seattle, ICIC promotes the use of evidence-based change concepts to enhance care. This site provides comprehensive resources about the Chronic Care Model, which views the patient as a partner with providers in decision-making, participation in care, and quality improvement. Useful tools and strategies for change and evaluation are shared.

Institute for Healthcare Improvement
Founded in 1991, IHI has been a leader in advancing the improvement of health care. IHI's ever-expanding website has a wealth of information on patient and family involvement in quality improvement and research. This includes strategies to capture the patient and family experience of care as well as to involve patients and families on research and evaluation teams. Particularly noteworthy are improvement stories from the Pursuing Perfection project, a challenge from the President, Donald Berwick, MD, to eliminate visiting restrictions, a Review of the Literature on Open Visiting Hours in the Intensive Care Unit, and a topical section devoted to patient- and family-centered care.

Joint Commission on Accreditation of Healthcare Organizations
JCAHO is the major accreditation body for health care organizations and programs in the United States . JCAHO has integrated patient- and family-centered care in their standards and offers a section of the website for patients and families to become more informed participants in health care. The organization offers resources for health care professionals to improve the safety and quality of health care including a white paper discussing the critical role of patient-centeredness in quality and safety titled, Health Care at the Crossroads: Strategies for Improving the Medical Liability System and Preventing Patient Injury.

National Initiative for Children's Healthcare Quality
NICHQ focuses on research and education to promote the quality of healthcare for children. It integrates, family-centered culturally competent care into its projects and offers a range of learning opportunities on topics such as medical home for children with special health care needs, reducing disparities in perinatal health and preventing childhood obesity.

Advocacy

Center for Effective Collaboration and Practice
It is the mission of CECP to support and promote a national preparedness to foster the development and the adjustment of children with or at risk of developing serious emotional disturbance. The center has published a series of monographs titled, Systems of Care: Promising Practices Children's Mental Health, and offers resources particularly for families, titled Briefs for Families on Evidence-Based Practices.

Emergency Medical Services for Children
The Emergency Medical Services for Children program is a national initiative designed to reduce child and youth disability and death due to severe illness and injury. Their initiatives encourage the involvement of all key stakeholders including providers, families, and community and national organizations. The site includes information about their Family Advocate Network, which offers strategies to support family involvement in improving emergency services. Also included is the resource, Working with Families to Enhance Emergency Medical Services for Children (Revised Edition).

Foundation for Informed Medical Decision Making
The mission of FIMDM is to strengthen the ability of patients in making decisions about their health care. The site offers evidence-based information about treatment options, interviews with patients, decision-aids to guide decision-making, and other tools on a variety of conditions.

National Patient Safety Foundation
With its mission to improve the safety and welfare of patients in the health care system. NPSF provides an indispensable amount of resources and links. An on-line journal entitled, Focus on Patient Safety is available and includes discussions on patient and family involvement in safety efforts.

Professionals with Personal Experience in Chronic Care
This group of health care professionals established PPECC to advocate for improved systems of care after personal and family experiences with chronic illness and long-term care. Health care professionals are encouraged to share their personal experiences with the health care system in order to promote greatly needed change.