Advocacy
Center for Effective Collaboration
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 for particularly for families, titled Briefs for Families on Evidence-Based Practice.
Families USA
This is a nonprofit organization that works at national, state, and grassroots levels with organizations and individuals assisting them in participating in shaping health care policies. A primary goal is to educate the public and policy makers about the experiences of families within health care systems and develop solutions to the problems families face.
Family Voices
Family Voices offers a variety of information and resources for families and providers caring for children with special health care needs. Family Voices activities embody the principles of patient- and family-centered care. There is a downloadable brief on families partnering with researchers to improve services for children with special health care needs, available at http://www.familyvoices.org/pub/projects/ConsortiumBrief15.pdf. In addition there are some helpful resources for parents pursuing leadership roles.
Federation of Families for Children's Mental Health
The FFCMH is a "family-run" organization dedicated to improving children's mental health care. The sections, Family Leadership through Policy, Systems of Care, and Evaluation, offers patient- and family-centered mental health materials and resources to promote involvement in advocacy, improvement activities, and evaluation efforts.
Kids as Self-Advocates
A project of Family Voices dedicated to meeting the needs of teenagers and young adults with special health care needs, along with their family members. This gateway connects children and young adults from all over the country providing information on specific conditions, along with support.
National Family Caregivers Association
Founded in 1993, NFCA serves as a clearinghouse of information and support for those caring for others who are aged, disabled, or chronically ill. There are a variety of helpful stories and tools to empower family caregivers and promote advocacy and activism. This site also connects families to other family caregivers.
National Health Council
This policy and membership organization works to improve the quality of health care. NHC has a section titled, Integrated Patient-Centered Care Initiative, promoting collaboration and interdependence across the health system and improved quality of care. In addition, NHC is driving the Putting Patients First campaign dedicated to educating and empowering consumers.
Pacer Center
This site serves parents, professionals, children, and young adults with special health care needs. It offers educational resources and links to supportive services for the special health care community. Resources are available on parent-to-parent support, disability laws and regulations, advocacy programs, and multicultural care topics.
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.
Voice for Patients
Voice4Patients is an organization devoted to empowering patients to be their own health care advocates in order to address patient safety concerns and medical errors. The organization advocates building partnerships between patients and providers and provides information and tools to strengthen consumer skills.
Education and Training
Accreditation Council for Graduate Medical Education - Outcome Project
The Outcome Project is a multi-decade initiative to transform medical education and the accreditation process. After a thorough literature review and obtaining feedback and input from representatives of all key constituencies, including patients, the ACGME standards were rewritten to include competencies in six areas. It is significant that several of these areas reflect a commitment to principles of patient- and family-centered care.
American Academy on Physician and Patient
The AAPP has set its mission to enhance health care through educational initiatives designed to improve communication and relationships between physicians and patients. Training opportunities, publications, and patient and family stories are offered on the site.
American Association of Colleges of Nursing
The AACN represents America 's baccalaureate- and higher-degree nursing education programs. In light of the serious nursing shortage and the current state of health care as described by the Institute of Medicine, the AACN is working to increase the workforce and enhance the role of nurses through a number of initiatives. Many of these integrate patient- and family-centered care such as the National Commission on Nursing Workforce for Long-Term Care.
American Medical Students Association, Cancer Outreach and Relief Effort
For over 15 years, CORE has been matching medical students with pediatric oncology patients and their siblings across various medical schools. The program is intended to provide individual emotional support for the patients and their siblings as well as relief for their parents while allowing medical students to gain a better understanding of the issues involved in chronic illness.
Association of American Medical Colleges
The AAMC is a nonprofit association of medical schools, teaching hospitals, and academic societies. The AAMC seeks to improve the nation's health by enhancing the effectiveness of academic medicine. Leaders in AAMC have been vocal supporters of patient- and family-centered care and have worked to integrate key concepts including cultural competence into academic medicine.
Future of Family Medicine
This site provides a detailed description and products of the FFM project which is a collaborative effort of seven organizations to develop a strategy to transform and renew the specialty of family medicine to meet the needs of individuals and society in a changing world. Based on a national research project, the FFM has come up with revised core values that include promoting a patient-centered team approach and elimination of barriers to access.
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.
Project DOCC
Project DOCC (Delivery of Chronic Care) improves the quality of care for severely chronically ill children and young adults by educating pediatricians-in-training about their special needs from a parent's perspective.
Facility Design
Center for Health Design
The Center for Health Design is a nonprofit research-and-advocacy organization of health care and design professionals who are leading the effort to improve health quality through architecture and design. The center provides information and technical assistance on evidence-based design.
In 2000, the Center for Health Care Design launched the Pebble Project. The purpose of this project "is to create a ripple effect in the healthcare community by providing documented examples of healthcare facilities whose design has made a difference in the quality of care and financial performance of the institution." An article, Better Health from Better Design?, in the January 2005 issue of Building Operating Management describes evidence-based design and the Pebble Project.
Healthcare Design
This site offers a quarterly journal for those interested in healthcare design. Many of the articles are available online and are helpful to those interested in integrating patient- and family-centered care principles into design projects. The Elements of Caring, reviews design elements that are particularly important in health care facilities such as views to nature, lighting, and cultural responsiveness. In the article, The Four Levels of Evidence-Based Practice, Kirk Hamilton, provides a framework for understanding how research about the impact of the environment on patients and staff can inform the practice of architects, interior designers, and other design professionals.
Robert Wood Johnson Foundation-Designing the 21st Century Hospital
Through a new project called "Designing the 21st Century Hospital," the Robert Wood Johnson Foundation is highlighting the importance of evidence-based design and encouraging its use. In June 2004, the RWJF sponsored an invitational meeting on this topic. The proceedings of the meeting are available both as a Webcast and a summary report.
Information and Support for Patients and Families
Agency for Healthcare Research and Quality
AHRQ funds, conducts, and disseminates research to improve the quality, safety, efficiency, and effectiveness of health care. The site includes a section titled, Be An Active Health Care Consumer, with information and resources to assist individuals in becoming active participants in their own health care including a guide to assessing health care quality.
Family Village
The Family Village at the University of Wisconsin-Madison provides a wide array of information and resources for people with disabilities, their families, and service providers. This online community offers information, resources, and peer support.
Florida Institute for Family Involvement
FIFI is a clearinghouse for information for children with special health care needs and works closely with public and private programs to foster partnerships between providers and families. This site offers a forum for families to partner with one another for support, as well as to receive vital information.
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.
Get Palliative Care
The site is designed to provide patients, family caregivers, doctors and policymakers with clear, concise palliative care information that can often be confusing to most consumers. The site is intended to be useful in the decision-making process and includes a comprehensive national directory of hospitals providing palliative care.
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.
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. While designed mainly for professionals, the site offers a Patient's Guide for patients and families who wish to learn more about improving chronic illness care.
Medically Induced Trauma Support Services
MITSS was created out of one woman's crusade to educate others about medically induced trauma due to her own experience of care. This organization provides information on support and education about medically induced trauma from the perspectives of clinicians, patients, and families.
Parents Helping Parents
This organization is a parent directed resource center for children with any kind of special need and their families. A variety of services are offered including parent-to-parent support, physician training, information and resources, technical assistance, and links to other online resources.
Parent to Parent-USA
Parent to Parent-USA (P2P-USA) is an alliance of state Parent to Parent programs that provide emotional and informational support to families of children who have special medical, developmental, emotional, or physical needs. P2P-USA can connect parents, family members, and professionals to a Parent to Parent program within their home or neighboring states, provide technical assistance to individual Parent to Parent programs, assist those interested in starting a Parent to Parent program, and educate parents, family members and professionals about the efficacy and methodology of parent to parent support.
Parent to Parent of Vermont
This parent-to-parent organization, founded in 1987, serves as an exemplary statewide program to help families with children with special needs find information and support from other parents, health care professionals and their communities. The organization also offers several opportunities for families who want to become more involved in changing the system, including programs to train families to serve as faculty in medical 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.
Peer-to-Peer Resource Center
This consumer driven organization works to support individuals affected by mental illness through trained peer mentorship. There are helpful links and resources on a variety of mental health topics to support those interested in advocating and learning about supportive services for the mental health community.
United Hospital Fund
Although this is a New York state organization, it has been at the forefront of shaping positive change in health care systems. A key focus has been on aging and chronic care and the site offers a section titled, Redesigning Health Care Services, containing family-centered resources and information for supporting caregivers.
Organizations Advancing Patient- and Family-Centered Care
Action Pact, Inc
Action Pact, Inc. is a firm that works with nursing homes and other elder organizations, assisting them in becoming more resident-directed. They promote change in two important ways: (1) encouraging the creation of collaborative organizational structures; and (2) facilitating the development of small, familiar communities which provide more opportunities for elders to care for themselves, make decisions, and have control over their daily lives. They encourage the involvement of residents and their families in all change processes.
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 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.
American Hospital Association
The AHA is the premier membership organization for U.S. hospitals and provides leadership and advocacy for member hospitals to improve care for patients and their families. IFCC collaborated with AHA to develop the toolkit, Strategies for Leadership: Patient- and Family-Centered Care. This toolkit provides a practical resource for leaders wishing to learn about and advance the practice of patient- and family-centered care. The AHA furthers its commitment to advancing patient- and family-centered care by incorporating core principles into the criteria for the McKesson Quest for Quality Prize.
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.
The Commonwealth Fund
This foundation offers researchers, leaders, and policy makers an opportunity to learn about current research on health and social policy. The publication, Mirror, Mirror on the Wall: Looking at the Quality of American Health Care Through the Patient's Eyes, offers readers an in-depth look at the patient's experience of care.
The Eden Alternative
The Eden Alternative is changing the experience of aging and disability across America and around the world. Through its education and guidance resources, it seeks to eliminate loneliness, helplessness, and boredom by promoting dynamic, humanistic, and engaging environments supportive of caring relationships.
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).
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.
Institute of Medicine
The IOM is affiliated with the National Academies of Science and serves as a non-profit organization devoted to providing leadership on health care. It serves as an excellent source for leaders and managers to gain access to current research and publications devoted to health care. IOM's major report, Crossing the Quality Chasm: A New Health System for the 21st Century, serves as a landmark publication in examining the problems of the current U.S. health care system and offering strategies for change. The predecessor to this publication, To Err is Human: Building a Safer Health System, is also available on the site.
The Kenneth B. Schwartz Center
Shortly before his death from lung cancer in September of 1995, Kenneth B. Schwartz established a center in Boston dedicated to strengthening the relationship between patients and caregivers in the changing health care system. The Kenneth B. Schwartz Center seeks to strengthen the relationship between patients and caregivers through: education, training and support; advocacy and policy development; and research. The Center supports initiatives that promise both immediate and long-term improvements to the patient-caregiver relationship by supporting educational efforts to help health care students and professionals relate to patients and their families more compassionately, supporting programs to help patients and providers communicate more effectively with one another, and creating opportunities for caregivers to give and receive support from one another.
National Association of Children's Hospitals and Related Institutions
NACHRI is a member organization whose purpose is to provide support and resources to pediatric health care facilities. The organization promotes family-centered pediatric care through their conferences, programs, and resources. The Winter 2005 issue of Children's Hospitals Today is titled, Meeting the Needs of Patients and Families: Beyond the Basics and describes family-centered initiatives.
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.
National Center for Education in Maternal and Child Health
The mission of this organization is to improve the health, education, and well-being of children and families. It focuses mainly on families and children with special health needs. Available services include bibliographies, publications, and referrals to online organizations.
Planetree
Planetree is an organization promoting a model of care that supports the patient and family as active participants in care and decision-making and emphasizes patient and family education. Planetree fosters cultural change in health care organizations and the creation of healing health care environments for patients, families, and staff.
Pioneer Network
The Pioneer Network is an organization bringing together elders, family members, administrators, nurses, physicians, social workers, educators, researchers, advocates, regulators and architects to promote culture change in all settings where elders live. The Network, through its conferences, speakers bureau, publications, and other resources, fosters the development of elder-directed communities.
Remaking American Medicine
Remaking American Medicine is a glimpse into the the pioneering work of providers, patients and their families, private purchasers, government agencies and others committed to making health care in America safe, evidence-based, patient- and family-centered, efficient, and effective.
Robert Wood Johnson Foundation
RWJF has been working for over 30 years to improve U.S. health care through supporting research, advocacy, and policy work. RWJF has funded innovative programs that integrate patient- and family-centered care into their initiatives. A good example can be found in a document describing a current project, Designing the 21st Century Hospital: Serving Patients and Staff, a great resource for leaders and managers undergoing a design project.
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.
Quality and Safety
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.
The Joint Commission
The Joint Commission, formerly know as JCAHO, is the major accreditation body for health care organizations and programs in the United States. The Joint Commission 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.
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.
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.
Vermont Oxford Network
For over 15 years, VON has been dedicated to improving the quality and safety of care for newborn infants and their families through education, research, and quality improvement projects. Several initiatives have encouraged the integration of family-centered care principles into quality improvement projects.
Research and Evaluation
Agency for Healthcare Research and Quality
AHRQ funds, conducts, and disseminates research to improve the quality, safety, efficiency, and effectiveness of health care. The information gathered from this work and made available on the website assists all key stakeholders - patients, families, clinicians, leaders, purchasers, and policymakers - make informed decisions about health care.
Beach Center on Families and Disability
Based at the University of Kansas, this organization has over fifteen years of experience in conducting research in partnership with individuals with disabilities and their families, professionals who provide services to them, and representatives of the communities in which they live. The site includes stories, references, and resources about this research framework, called Participatory Action Research.
Consumer Quality Initiatives - Participatory Action Research Center
The PARC is devoted to guide the research and evaluation activities of the Consumer Quality Initiatives - a consumer directed mental health organization based in Massachusetts. Their mission is to prepare and support patients and families to partner with professionals in planning, implementing, and disseminating the results of research and evaluation projects.
Health Research and Educational Trust
Affiliated with the American Hospital Association, HRET supports research and education for health care consumers, professionals, and institutions. The organization's efforts focus on community health, health care coverage and access, innovative research, and promising practices. Visitors can download white papers, bibliographies, and practical resources for evaluation and research, such as The Collaboration Primer and Public-Private Partnerships to Improve Health Care.
National Research Corporation
NRC has over 23 years experience in health care research involving clients such as hospitals and health systems, managed care organizations, and federal and state agencies. It continues to be a leader in driving change to improve the patient's experience of care. This site offers helpful information related to patient- and family-centered care. The Eight Dimensions of Patient-Centered Care provides a resource for learning about the principles of patient-centered care.
Orelena Hawks Puckett Institute
The Puckett Institute develops and conducts research and evaluation, implements demonstration projects, and provides training and technical assistance on issues affecting infants, young children, and their families. The Directors of the Institute have over two decades of research experience and have focused efforts on eliminating the factors that interfere with the ability of research to lead to evidence-based practice. For those interested in an innovative way to view evidence-based research and practice, visit the Research to Practice Center.
Press Ganey Associates, Inc.
Press Ganey is a recognized leader in measurement and improvement of satisfaction with health care. They have worked with over 6,000 hospitals to assist in studying patient and family satisfaction and improving the overall quality of health care. A helpful resource is an article on Patient-Centered vs. Facility-Centered Care.
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.