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Useful Links

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.

The Beach Center on 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.

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.

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.

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.

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.

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.