Useful Websites and Resources
Websites
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.
AskMe3
An initiative of the Partnership for Clear Health Communication at the National Patient Safety Foundation, this site has information and practical strategies for patients, providers, public health organizations, and employers to address health literacy issues.
California HealthCare Foundation
This independent philanthropy, committed to improving health care delivery and financing in California, funds research, resource development, and innovative programs. The Foundation has been at the forefront of improving care for those with chronic conditions, increasing access to care, integrating technology, and reducing disparities in health care. Their website offers reports, project summaries, and resources to guide change in primary care.
Center for Information Therapy
As described on the website, information therapy is the "timely prescription and availability of evidence-based health information to meet individuals' specific needs and support sound decision making." The Center is dedicated to advance the practice and science of information therapy to improve health, consumer decision-making and healthy behaviors. Related webcast recordings, conference presentations, blogs, white papers, selected research summaries, and a consumer guide are accessible on the site.
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 Governance Support Team
There are a number of resources in the United Kingdom supporting and encouraging the involvement of patients and families in improvement activities. The Clinical Governance Team within the National Health Service (NHS) supports Patients Accelerating Change (PAC), facilitating the involvement of patients and families in hospital and primary care improvement and health care redesign initiatives. Clinical governance provides a framework for continuous quality improvement, the assurance of the highest standards of care, and accountability within the NHS in the United Kingdom. The involvement of patients, carers (families), and the public, is central to this work. The website has useful links and a variety of resources for health care professionals and leaders.
Collaborative Family Healthcare Association
The Collaborative Family Healthcare Association (CFHA) promotes a comprehensive and cost-effective model of healthcare delivery that integrates mind and body, individual and family, patients, providers and communities. CFHA achieves this mission through education, training, partnering, consultation, research and advocacy. 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. A special section of the Fund's website is devoted to their Patient-Centered Primary Care Initiative launched in 2005.
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.
Consumer Quality Initiatives - Participatory Action Research Center
The Center oversees the research and evaluation activities of the Consumer Quality Initiatives, a consumer-directed mental health organization based in Massachusetts. Its 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.
Family Health Advocate
The Family Health Advocate is a service of the American Academy of Family Physicians. It is focused on advocating for issues such as the patient-centered medical home and the cost of health insurance -- issues that matter to both family practitioners and their patients. The site provides links for patients to contact their legislators, as well as tips to make the most effective contact possible. A monthly electronic newsletter, Engaging Your Health, is offered free of charge.
Foundation for Informed Medical Decision Making
The mission of FIMDM is to strengthen the ability of patients to actively participate with health care providers 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.
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.
Health Disparities Collaboratives
The Health Resources and Services Administration (HRSA) Bureau of Primary Health Care (BPHC), in partnership with the Institute for Healthcare Improvement, created a nationwide initiative to improve care for people with chronic conditions and to eliminate health disparities. The website offers training manuals, tools and resources, and opportunities to get involved.
How's Your Health
Anyone can log onto this site and receive a two-part "10 Minute Health Checkup." The first part is survey with questions about health, habits, knowledge about disease prevention, and satisfaction with health care providers. Part two is the individualized information and individual receives based on their survey responses. This includes recommended readings, an action form with a summary of responses to share with a health care provider, and condition management forms to keep track of health and progress.
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 Family-Centered Care
The Institute extends its efforts to advance the practice of patient- and family-centered care through its website. The site includes a wealth of practical resources for and profiles from families, providers, and institutions on collaboration at all levels of health care.
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 Healthcare Improvement
Founded in 1991, IHI has been a leader in advancing the improvement of health care. IHI's ever-expanding Web site 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 related to primary care are the topic sections on chronic conditions, office practices, patient-centered care, and self-management support.
The John D. Stoeckle Center for Primary Care Innovation
The Stoeckle Center seeks achievable ways to redesign the delivery of primary care. Drawing on the resources of Massachusetts General Hospital and the expertise and experiences of patients themselves, the Stoeckle Center focuses on encouraging innovation at the practice level, education of physicians and medical students, and research. Patients and families are actively involved in these efforts.
National Center for Cultural Competence
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 for improving primary health care including self-assessment tools and publications as well as on-site training and education.
National Initiative for Children's Healthcare Quality
NICHQ strives to make dramatic improvements in the quality of care for children and adolescents by encouraging research and education. It integrates, family-centered, culturally competent care into its projects and offers a range of learning opportunities on topics such as medical homes for children with special health care needs, reducing disparities in pediatric and perinatal health, and preventing childhood obesity.
National Patient Safety Foundation
The Foundation's mission is to improve the safety and welfare of patients in the health care system, Its website provides, among other resources, an area devoted solely to resources for patients and families who wish to get involved in patient safety initiatives.
New Health Partnerships
New Health Partnerships is an online community for patients, families, and health care providers dedicated to improving the health care and lives of people with chronic conditions. Profiles of individuals and organizations, information, tools, and other resources promoting collaborative self-management support are offered.
Patient-Centered Primary Care Collaborative
A coalition of major employers, consumer groups, and other stakeholders who have joined with organizations representing primary care physicians to develop and advance the patient-centered medical home.
Patient Decision Aids
This site is part of the Ottawa Health Research Institute and was created to assist clinicians and patients make difficult health care decisions. The program is research-based and the site offers online tools, clinician training programs, research tools, and other resources.
Patient Powered: Patient Centered Healthcare in Whatcom County
In 2002, St. Joseph Hospital in Bellingham, Washington, on behalf of the Whatcom County Community Health Improvement Consortium, was awarded a grant from the Robert Wood Johnson Foundation to participate in the Pursuing Perfection in Health Care initiative. As part of the project, patients developed this website to provide information and resources for individuals with chronic conditions. Any visitor to the site can access, complete, and print out the personal health record titled the Shared Care Plan.
Picker Europe
Picker Europe, a not for profit organization located in Oxford, England, is committed to ensuring that the voices of patients inform quality improvement and health care redesign. Its primary strategies are: "Measurement-Researching and evaluating patients' experience; Improvement-Leading initiatives that make improvements happen; and Policy-Building evidence to inform health policy." The organization supports a variety of endeavors to involve patients and the public in health care and in the improvement of health care. Information about Patients Accelerating Change initiative are also available on this website. Publications and information about surveys are available on its website.
Resources
Blaylock, B. L., Ahmann, E., & Johnson, B. H. (2002). Creating patient and family faculty programs. Bethesda, MD: Institute for Family-Centered Care.
Bodenheimer, T. S. (2007). Motivating change: Innovative approaches to patient self-management. Oakland, CA: California HealthCare Foundation. Available at http://www.chcf.org/topics/chronicdisease/index.cfm?itemID=133518.
Bodenheimer, T. S., & Grumbach, K. (2007). Improving primary care: Strategies and tools for a better practice. Columbus, OH: McGraw-Hill Companies.
Christopher, F, & Eisen, M. (Executive Producers). (2006). Remaking American medicine: Healthcare for the 21st century. [Videotape], Santa Barbara, CA: Crosskeys Media. Available at http://www.remakingamericanmedicine.org/purchase.html.
Conway, J., Johnson, B. H., Edgman-Levitan, S., Schlucter, J., Ford, D., Sodomka, P., & Simmons, L. (2006). Partnering with patients and families to design a patient- and family-centered health care system: A roadmap for the future - A work in progress. Available at http://www.familycenteredcare.org/pdf/Roadmap.pdf.
Cooley, C. W., & McCallister, J. W. (2001). Building a medical home: Improvement strategies in primary care for children with special health care needs: Medical home improvement kit. Greenfield, NH: Center for Medical Home Improvement. Available at http://www.medicalhomeimprovement.org/mhik.htm.
Coulter, A., & Ellins, J. (2007). Effectiveness of strategies for informing, educating, and involving patients. British Medical Journal, 335, 24-27.
Dillon, A. D. (2003). Parent partners: Creative forces on medical home improvement teams. Greenfield, NH: Center for Medical Home Improvement.
Giachello, A. L., Arrom, J. O., Davis, M., et al. (2003). Reducing diabetes health disparities through community-based participatory action research: the Chicago Southeast Diabetes Community Action Coalition. Public Health Reports, 118, 309-323.
Heisler, M. (2006). Building peer support programs to manage chronic conditions: Seven models for success. Oakland, CA: California HealthCare Foundation.
Johnson, B., Abraham, M., Conway, J., et al. (In Press). Partnering with patients and families to design a patient- and family-centered health care system: Recommendations and promising practices. Bethesda, MD: Institute for Family-Centered Care.
Lorig, K. (2001). Patient education: A practical approach (3rd ed.). Thousands Oak, CA: Sage Publications.
McGreevey, M. (Ed.), (2006). Patients as partners: How to involve patients and families in their own care. Oakbrook Terrace, IL: Joint Commission Resources, Inc.
Moore, L. G., & Wasson, J. (2006). An introduction to technology for patient-centered collaborative care. Journal of Ambulatory Care Management, 29(3), 195-198.
Pillow, M. (Ed.), (2007). Patients as partners: Toolkit for implementing national patient safety goal 13. Oakbrook, IL: Joint Commission Resources, Inc.
Wagner, E. H., Bennett, S. M., Austin, B. T., et al. (2005). Finding common ground: patient-centeredness and evidence-based chronic illness care. Journal of Alternative and Complementary Medicine, 11, Suppl 1. S7-15.
Webster, P. D., & Johnson, B. H. (In Press). Developing patient- and family-centered vision, mission, and philosophy of care statements. Bethesda, MD: Institute for Family-Centered Care.
Webster, P. D., & Johnson, B. H. (2000). Developing and sustaining a patient and family advisory council. Bethesda, MD: Institute for Family-Centered Care.