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Useful Links

Advocacy

Advocacy for Patients with Chronic Illness
Advocacy for Patients with Chronic Illness was founded in March 2005, by attorney Jennifer C. Jaff. In addition to the website, there is a blog and a monthly e-newsletter to keep consumers informed about health reform, and comments on regulations implementing reform from the unique perspective of patients with chronic illness. Advocacy for Patients has published a book of stories to help policymakers understand what it's like to live with chronic illness, as well as a video on living with chronic illness, all of which can be found on the page of this website, the Chronicity project.

Association for Patient Experience
The Association is committed to advancing the patient experience and positively impacting the global delivery of patient-centered healthcare. Any healthcare provider or representative who impacts the patient experience is invited to join the Association for Patient Experience.

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.

Center for Patient and Professional Advocacy
The Center for Patient and Professional Advocacy (CPPA) at Vanderbilt University Medical Center promotes patient and professional satisfaction with healthcare experiences and restrain escalating costs associated with patient dissatisfaction. Their vision is to be a recognized leader in ongoing quality improvement, promotion of patient safety, and reduction of malpractice risk through interventions based on patient and family assessments of healthcare services.

The Empowered Patient Coalition
is a an organization created by patient advocates devoted to helping the public improve the quality and the safety of their healthcare. The coalition feels strongly that the first crucial steps in both patient empowerment and patient safety efforts are information and education.

Every Patient's Advocate
Ever since the misdiagnosis experience that launched Trisha Torrey's career as Every Patient's Advocate, her primary audience, and the focus of most of her work, has been patients, their access, their experiences and their health and medical outcomes.

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.

HEARTS in HEALTHCARE
HEARTS in HEALTHCARE is an inspirational community of health professionals, students, patient advocates, health leaders, and many others who are champions for compassionate care. We believe bringing like-minded people together is the first step to re-humanizing healthcare around the world.

Inspire
Inspire partners with the most respected national patient advocacy organizations to provide safe, online health and wellness communities in which patients, families, friends and caregivers connect with one another for support and information. Inspire builds online health and wellness communities for patients and caregivers, in partnership with national patient advocacy organizations, and helps life science organizations connect with these highly engaged populations.

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.

National Patient Advocate Foundation
National Patient Advocate Foundation is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels. Patient Advocate Foundation's Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.

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.

Partners in Patient Health
Partners in Patient Health is designed for ongoing dialogue and partenership across the patient advocacy community. By working together in new ways, advocates can develop a deeper understanding of common issues and magnify their collective impact on people's health.

Professional Patient Advocate Institute
The Professional Patient Advocate Institute is a community aligned around a single cause-providing first-class advocacy for patients as they attempt to navigate the complex healthcare system.

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.

TalkAboutHealth
TalkAboutHealth is a disease specific social learning and support community that collects and organizes the knowledge and expertise of the world's leading medical professionals. This is a patient support program using social media to connect patients with trained peer survivors for decision and emotional support.

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.

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Education and Training

Accreditation Council for Graduate Medical Education (ACGME)
The Accreditation Council for Graduate Medical Education (ACGME) is responsible for the Accreditation of post-MD medical training programs within the United States. Accreditation is accomplished through a peer review process and is based upon established standards and guidelines.

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.

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.

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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, Evidence Based Design in Health Care Facilities, 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.

Institute for Patient-Centered Design, Inc.
The Institute for Patient-Centered Design, Inc. is a non-profit organization established to facilitate a positive patient experience by serving patients, healthcare providers and designers. The web site provides a voice for patients seeking a more responsive built environment in a healthcare setting and provides information to healthcare providers regarding the patient's expectations of a healthcare facility, among other things.

Robert Wood Johnson Foundation-Designing the 21st Century Hospital
Through a 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 and the Center for Health Design sponsored an invitational meeting on this topic. Learn more.

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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.

Canadian Association of Paediatric Health Centres
The Canadian Association of Paediatric Health Centres - CAPHC is a non-profit organization that brings together many healthcare organizations across the country representing multidisciplinary health professionals providing health services for children, youth and their families within quaternary and tertiary health centres, community health centres, rehabilitation centres, and home care provider agencies nationwide.

Consumer and Patient Health Information Section
CAPHIS is a section of the Medical Library Association, an association of health information professionals with more than 5,000 individual and institution members. MLA fosters excellence in the professional achievement and leadership of health sciences library and information professionals to enhance the quality of health care, education, and research.

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 411
The U.S. Agency for Healthcare Research and Quality's Healthcare 411 audio news source provides practical health care information, research findings, and data to help consumers, health providers, health insurers, researchers, and policymakers make informed decisions about health care issues.

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.

International Council of Nurses: Informed Patient Project
The International Council of Nurses is a federation of national nurses' associations (NNAs), representing nurses in more than 128 countries. Founded in 1899, ICN is the world's first and widest reaching international organisation for health professionals. Operated by nurses for nurses, ICN works to ensure quality nursing care for all, sound health policies globally, the advancement of nursing knowledge, and the presence worldwide of a respected nursing profession and a competent and satisfied nursing workforce.

The International Council of Nurses is a federation of national nurses' associations (NNAs), representing nurses in more than 128 countries. Founded in 1899, ICN is the world's first and widest reaching international organisation for health professionals. Operated by nurses for nurses, ICN works to ensure quality nursing care for all, sound health policies globally, the advancement of nursing knowledge, and the presence worldwide of a respected nursing profession and a competent and satisfied nursing workforce.

Lotsa Helping Hands
Lotsa Helping Hands powers online caring Communities that help restore health and balance to caregivers' lives. Our service brings together caregivers and volunteers through online Communities that organize daily life during times of medical crisis or caregiver exhaustion in neighborhoods and communities worldwide. Caregivers benefit from the gifts of much needed help, emotional support, and peace of mind, while volunteers find meaning in giving back to those in need.

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.

National Partnership for Women and Families
Our goal is to create a society that is free, fair and just. Where nobody has to experience discrimination, all workplaces are family-friendly, and no family is without quality, affordable health care and real economic security.

Patients' Association of Canada
The Patients' Association of Canada promotes the participation of patients and the patient perspective in health care in order to improve the healthcare experience for all.

The Patients' Association of Canada (PAC) has been established to fill an important gap in the health field. Until now, there have been no national patient-led and patient-governed organizations that speak to the experience that people have as patients. In many public discussions about health care, the patient perspective is presented by health care professionals, disease-based organizations, researchers, or policy makers who have their own points of view that are not the same as those of patients.

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.

Patient Power®
Patient Power® is built on a library of programs, which continues to grow with the addition of each week's new webcasts. These programs feature top medical experts and inspiring patients from some of America's leading medical institutions. They can be heard live on the Web.

The Patients Voice
The Patients Voice conducts medical interviews with patients and their carers over the web, at home or at a special research facilities depending on what type of study it is. They also run patient diaries and blogs, so that you can share your opinions as honestly and informally as you like.

The Patient Voices Network
The Patient Voices Network brings patients together from around British Columbia to connect, share their experiences and learn from each other.

PatientsLikeMe
PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS at the age of 29. PatientsLikeMe is a health information sharing website for patients where patients can share and learn from real-world, outcome-based health data.

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. To help forge effective working partnerships between family caregivers and health care professionals, the Fund establishes the Next Step in Care campaign and website.

Vermont Family Network
Vermont Family Network empowers parents, families, children and adults who have, or are at risk for, special needs to be effective advocates for their health, education and well-being. The Vermont Family Network provides information, support, and advocacy, and promotes family-centered policies and practices. 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. The current Vermont Family Network formed in 2008 when Vermont Parent Information Center (VPIC) and Parent to Parent of Vermont merged.

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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 Board of Internal Medicine Foundation (ABIMF)
provides access to an array of resources to help individuals and organizations adopt and promote medical professionalism in practice.

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.

Canadian Association for People-Centred Health
CAPCH is a national, non-partisan, independent, not-for-profit organization. Through research projects, events, and online communities, CAPCH promotes the need for people-centred health, works to establish standards for people-centred health care, and encourages collaboration on innovative eHealth research. CAPCH brings together academics, health care professionals, and patients to deliver working eHealth projects that highlight the benefits of people-centred care. CAPCH includes a rapidly growing collaborative of advocacy leaders who are committed to providing leadership in all aspects of the evolution to a people-centred health system.

Center for Advancing Health
The Center for Advancing Health advocates for public and private policies that support the active, effective participation by individuals in their care and to produce and disseminate to the news media new stories on the latest research relevant to individuals' engagement in their care.

Center for Connected Health
Founded in 1995 by Harvard Medical School teaching hospitals, the Center for Connected Health develops new strategies to move health care from the hospital and doctor's office into the day-to-day lives of patients. Leveraging information technology—cell phones, computers, networked devices and simple remote monitoring tools—the Center helps providers and patients manage chronic conditions, maintain health and wellness, and improve adherence, engagement and clinical outcomes.

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.

The Health Administration Project
The Health Administration project is a young informational resource that strives to inform on the topic of health administration and management and is a general information website with many resources useful to current and future health administrators.

Health Behavior News Service
The Health Behavior News Service disseminates news stories on the latest findings from peer-reviewed research journals. HBNS covers both new studies and systematic reviews of studies on (1) the effects of behavior on health, (2) health disparities data and (3) patient engagement research. The goal of HBNS stories is to present the facts for readers to understand and use for themselves to make informed choices about health and health care.

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.

NAQC Nursing Alliance for Quality Care
NAQC is committed to translating patient engagement strategies from theory into practice and also interested in showcasing best practices, educational approaches, and/or tools that foster patient and provider engagement.

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.

National Quality Forum-Endorsed Practices and Quality Measures for Patients
To improve care for patients, reduce waste, and increase coordination within the fragmented U.S. healthcare system, the National Quality Forum (NQF) has endorsed 10 performance measures and 25 preferred practices for care coordination.

Partnering with Patients
The Clinical Excellence Commission (CEC) has established the Partnering with Patients program to foster the inclusion of patients and family as care team members to promote safety and quality. The Program recognises the importance of improving quality of care by responding to the needs and preferences of patients while equally engaging staff in creating supportive environments for all.

Partnership for Patients
The Partnership for Patients initiative is a public-private partnership working to improve the quality, safety and affordability of health care for all Americans.

The Partnership for Patients and its over 3,700 participating hospitals are focused on making hospital care safer, more reliable, and less costly through the achievement of two goals:

  1. Making Care Safer. By the end of 2013, preventable hospital-acquired conditions would decrease by 40% compared to 2010.
  2. Improving Care Transitions. By the end of 2013, preventable complications during a transition from one care setting to another would be decreased so that all hospital readmissions would be reduced by 20% compared to 2010.

The Patient Centered Primary Care Collaborative
(PCPCC) is a coalition of major employers, consumer groups, patient quality organizations, health plans, labor unions, hospitals, clinicians and many others who have joined together to develop and advance the patient centered medical home (PCMH).

Patients as Partners
Patients as Partners guiding principle is that patients are partners in health care: collaborating with health care professionals to improve their own health as individuals, and having a voice in how health care is delivered in B.C. Patients as Partners is a made in B.C. partnership between the B.C. Ministry of Health, health care providers, universities, health care not-for-profits and non-governmental organizations that work together to include the patient voice, choice and representation in health care improvement.

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.

Prepared Patient® Forum
The Prepared Patient® Forum is an interactive website, created and maintained by the Center for Advancing Health designed to help people find good health care and make the most of it. The Forum offers a place for people to read and share experiences about seeking health care; it provides links to trusted and helpful resources; and it publishes the latest news about research related to the decisions people must make about their health and their care.

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 for Participatory Medicine
The Society for Participatory Medicine is a 501(c)3 public charity devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other written materials. Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

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.

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Quality and Safety

AHRQ Patient Safety Network
(PSNet) is a national web-based resource featuring the latest news and essential resources on patient safety. The site offers weekly updates of patient safety literature, news, tools, and meetings ("What's New"), and a vast set of carefully annotated links to important research and other information on patient safety

Alliance for Safety Awareness for Patients
The Alliance for Safety Awareness for Patients working in conjunction with established advocacy groups, healthcare providers and legislators strives to end the spread of preventable hospital-acquired infections by empowering the public to make informed decisions, demand accountability from their healthcare providers and become proactive participants in their own health care.

Australian Commission on Safety and Quality in Health Care
The Commission leads and coordinates national improvements in safety and quality in health care throughout Australia. They aim to support health care professionals, organizations, and policy makers who work with patients and providers.

Beth Israel Deaconess Medical Center
Beth Israel Deaconess Medical Center (BIDMC) is committed to providing understandable, usable, and timely information on their quality and safety record - information that will help patients and families feel confident in the care they receive.

British Columbia Patient Safety and Quality Council
The British Columbia Patient Safety & Quality Council was created to enhance patient safety, reduce errors, promote transparency and identify best practices to improve patient care. The Council fulfills this mandate by advising the Minister of Health on patient safety and quality of care issues, as well as supporting initiatives that encourage collaboration and coordination from health system stakeholders.

Campaign ZERO
Campaign ZERO offers simple explanations about how common hospital hazards occur and easy checklists to help families safeguard their loved ones' care in the hospital.

Canadian Patient Safety Institute
The Canadian Patient Safety Institute (CPSI) is a non-profit organization that raises awareness and facilitates implementation of ideas and best practices to achieve a transformation in patient safety. They envision safe healthcare for all Canadians and aspire towards improvement in patient safety and quality.

Capital Health
At Capital Health their commitment is to create an environment for excellence of care. With the foundation of the clinical professionals providing care to patients and clients, along with the support of the communities they serve, they promise to provide a safe, quality service for patients and families.

Cautious Patient Foundation
The Cautious Patient Foundation provides patients and their families a platform where they can receive advice on getting quality healthcare from a credible source, and utilize the tools that can help them maintain up-to-date health records. There is a community for patients to participate in, share their stories and seek advice from professionals and peers.

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.

Children's Hospital Colorado
The Children's Hospital Colorado strives to be the leader in providing the best healthcare outcomes for children through an integrated pediatric healthcare delivery system.

Cleveland Clinic Quality and Patient Safety Institute
Cleveland Clinic focuses on reconnecting quality and patient safety with clinical care, which supports their health system's commitment to quality and patient care.

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.

Consumers Advancing Patient Safety
A consumer-led, nonprofit organization, CAPS serves as a voice for providers, patients and families, and consumers dedicated to improving the safety of health care though partnerships and collaboration. The CAPS website provides information on a variety of patient safety programs and tools for building the capacity of consumers for collaboration.

Dana Farber Cancer Institute
Dana-Farber is dedicated to safe, effective, compassionate, patient-centered care. Patient safety is at the core of the Institute's mission and vision, and Dana-Farber has been a leader in advancing safe practices and reducing the risk of medical error.

Get My Health Card
The Get My Health Card campaign was launched by the Indianapolis Coalition for Patient Safety in partnership with several central Indiana nonprofit organizations. The goal of the campaign is to emphasize the importance of communicating one's medication and health history with care providers.

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.

Legacy Health
Legacy Health continues to improve the quality and safety of the care they deliver and is committed to providing the necessary information to make informed decisions about where to seek care.

McGill University Health Centre
The McGill University Health Centre cites patient safety as a team effort. Both patients and health care providers play an important part in minimizing risk and improving safety.

Missouri Center for Patient Safety
The Missouri Center for Patient Safety (MOCPS), dba Center for Patient Safety, is a private, not-for-profit corporation dedicated to fostering change throughout the nation's health care delivery systems and across the continuum of care. It was established by The Missouri Hospital Association (MHA), the Missouri State Medical Association (MSMA) and Primaris in response to recommendations from the Governor's Commission for Patient Safety.

Mount Auburn Hospital Healthcare Quality and Patient Safety Program
The mission of Mount Auburn Hospital's Department of Quality and Safety is to ensure that Mount Auburn patients receive outstanding care in all aspects of their experience through the Quality and Safety Department.

National Association for HealthCare Quality
NAHQ provides education, leadership development opportunities, and products to support quality professionals in order to realize the promise of healthcare improvement through innovative practices in quality and patient safety. NAHQ produces the Journal for Healthcare Quality

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 Agency (NPSA)
The Patient Safety Division of the United Kingdom's National Health Service (NHS) aims to identify and reduce risks to patients receiving NHS care and leads on national initiatives to improve patient safety.

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.

Park Nicollet
Park Nicollet puts patient safety and quality at the heart of everything they do. They are fully accredited by the Joint Commission and celebrate many outstanding achievements each year.

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.

Project Patient Care
Project Patient Care is an independent Chicago-based nonprofit organization working to prevent medical errors and continuously improve healthcare quality. We are a diverse community of patients, family members of patients, healthcare professionals and organizational leaders. We care deeply about ensuring that every patient gets the right care at the right time.

Safety Leaders
Safety Leaders is an organization created by The Texas Medical Institute of Technology (TMIT), a medical research organization. Subject matter includes leadership, healthcare-associated infections, medication management, use of healthcare information technologies, and specific high-impact practices that can reduce harm to patients. TMIT applies the Institute of Medicine's (IOM) design principles of patient-centeredness, evidence-based medicine, and systems performance improvement. Solutions must enable best or better practices that deliver patient-centered care, rather than procedure-, facility-, or doctor-centered care.

Spectrum Health
At Spectrum Health, the integrated health care system is dedicated to evidence-based, patient-centered medicine and patient safety.

Story Care
By placing the patient's experience and safety at the center of your caregivers' attention, StoryCare is just-in-time simulation training that helps them develop an easy approach to meeting the complex demands that multiple initiatives exert on busy schedules. In fact, it requires less than 15 minutes of team huddle time each week, and no online or classroom training away from patient care.

Sutter Health
Sutter Health has adopted an evidence-based model of care to further improve patient outcomes. Drawing from their own best practices and scientific proof of the most effective treatments, they're finding better ways of caring for patients.

VA National Center for Patient Safety
The NCPS was established in 1999 to develop and nurture a culture of safety throughout the Veterans Health Administration. Our goal is the nationwide reduction and prevention of inadvertent harm to patients as a result of their care. Patient safety managers at 153 VA hospitals and patient safety officers at 21 VA regional headquarters participate in the program.

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.

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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 Priorities Partnership
The National Priorities Partnership (NPP) offers consultative support to the Department of Health and Human Services on setting national priorities and goals for the HHS National Quality Strategy. The 48 member organizations also play a key role in identifying strategies for achieving the aims of better care, affordable care, and healthy people and communities; and facilitating coordinated, multi-stakeholder action.

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.

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.

Patient-Centered Outcomes Research Institute
The Patient-Centered Outcomes Research Institute (PCORI) is an independent organization created to help people make informed health care decisions and improve health care delivery. PCORI will commission research that is guided by patients, caregivers and the broader health care community and will produce high integrity, evidence-based information.

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.

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.

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