Past Initiatives and Collaborative Projects
IPFCC provides essential leadership for advancing the practice of patient- and family-centered care. By promoting collaborative, empowering partnerships among patients, families, and health care professionals, IPFCC facilitates patient- and family-centered change in all health care settings. IPFCC also serves as a central resource for policy makers, administrators, program planners, clinicians and staff, educators of health professionals, design professionals, and patient and family advisors and leaders.
In addition to working with individual health care systems, hospitals, and primary care practices, IPFCC works on collaborative endeavors with many organizations and agencies. Below is a sampling of initiatives and collaborative projects from IPFCC 's last decade:
IPFCC convenes several educational meetings every year. What makes IPFCC meetings unique is that sessions are led by teams that include patient and family advisors, as well as clinicians, staff, health care leaders, and researchers. Approximately 25% percent of attendees are patient and family advisors and leaders. These patient and family leaders—both presenters and participants—bring their unique experiences from around the globe and share their own best practices and strategies for success.
IPFCC convenes an International Conference every two years, and two Intensive Training Seminars each year. These meetings are offered in various locations around the USA, and sometimes in other countries. IPFCC partners with leading hospitals, health systems, and other organizations that provide leadership and program support for IPFCC's meetings. The 6th International Conference was held in Vancouver in the summer of 2014, with leadership support from Providence Health Care and program support from the Canadian Foundation for Healthcare Improvement. Recent seminar partners have included Moffit Cancer Center and a consortium of Florida hospitals, Methodist Le Bonheur Healthcare, Brigham and Women's Hospital, and Stanford Hospital & Clinics. Learn more about past seminars. Learn more about current meetings.
IPFCC offers webinars on "hot topics" to advance the practice of patient- and family-centered care. Webinars include presentations by IPFCC faculty members and nationally recognized experts, including patient and family leaders as educators, with the opportunity for participants to ask questions and discuss the topic.
Other Past Initiatives and Collaborative Projects
With the support of the Rothschild Foundation, IPFCC developed—for executives and senior managers of hospitals and long-term care settings—multimedia resource materials on partnering with patients, residents of long-term care facilities, and families to improve care, programming, and health care design. These resources are intended to be transformative, capturing the interest and sparking the creativity and commitment of leaders to encourage and support partnerships across the continuum of care. In addition, several IPFCC publications were updated as a part of this project.
These resources are available for purchase on IPFCC's website resources page.
Partnering with Patients, Residents, and Families: A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities, is a timely and comprehensive guide that shows how partnerships with patients, residents living in long-term care communities, and families have been essential to organizational change in health care settings across the continuum of care. It provides a framework for senior leaders to create and sustain effective partnerships and offers specific steps that leaders can take to develop partnerships to redesign and improve health care. Best practices from over 130 exemplary organizations provide concrete and real-world examples. Several practical tools and a detailed listing of written, audiovisual, and online resources are included. A chart, describing outcome data associated with partnerships, is also included in the publication.
Partnerships with Patients, Residents, and Families: Leading the Journey, is a 20-minute video that highlights the accomplishments and ongoing activities of key leaders who have created exemplary partnerships in two health care organizations representing very different types of care settings—acute and long-term, urban and rural. MCGHealth System in Augusta, Georgia, (now known as Georgia Health Sciences Health System) is an urban academic center with a large ambulatory program. Perham Memorial Hospital and Home (now known as Perham Health and Perham Living), in Perham, Minnesota, is a rural, critical access hospital with a long-term care community. The video captures the experiences of leaders in these organizations and shares their insights regarding the benefits of collaborating with patient, resident, and family advisors.
IPFCC is grateful to the Hulda B. & Maurice L. Rothschild Foundation for their generous support of both the guide and video.
IPFCC participated on a team, led by the American Institutes for Research, for an Agency for Healthcare Research and Quality (AHRQ) funded multi-year initiative to develop, evaluate, and implement a guide to promote patient and family engagement in hospital settings. Other organizations in this collaborative endeavor included, Consumers Advancing Patient Safety, the Joint Commission, the Health Research & Educational Trust, Planetree, the Maryland Patient Safety Center, Aurora Health Care, and Emory University Hospital.
In 2013, AHRQ released its Guide to Patient and Family Engagement in Hospital Safety and Quality. This online resource provides four evidence-based strategies for hospitals to engage patients and families in their care. These field-tested strategies can help make care better and safer by bridging the communication gaps among patients and families and their health care providers.
IPFCC collaborated with the Committee on Hospital Care of the American Academy of Pediatrics (AAP) in releasing the Patient- and Family-Centered Care and the Pediatrician's Role (2012). This revised AAP policy statement, co-written by Jerrold Eichner, MD, FAAP, Chair of the AAP Committee on Hospital Care 2007-2011, and Beverley Johnson, IPFCC's President and CEO, provided recommendations to promote patient- and family-centered care "throughout the health care system, including education of professionals, health care systems planning and facility design, and research."
The Academy first adopted a policy statement on Family-Centered Care and the Pediatrician's Role in 2003, and reaffirmed this Policy Statement in May 2007. An important difference in this 2012 revised policy statement is that the term family-centered care is replaced with the term "patient- and family-centered care," to "more explicitly capture the importance of engaging the family and the patient in a developmentally supportive manner as essential members of the health care team." This term recognizes that the "family is the child's primary source of strength and support and that the child's and the family's perspectives and information are important in clinical decision-making." This revised policy statement "specifically defines the expectation of patient- and family-centered care," citing research that indicates that patient- and family-centered care results in improved quality of care and patient safety, reduced health care costs, more effective use of health care resources, improved experience of care, and improved satisfaction for the patient, family, staff, and pediatrician.
IPFCC staff served as faculty to the NIC/Q 2009 Quality Improvement Collaborative of the Vermont Oxford Network (VON), which ran through December 2010. VON is an international organization committed to improving quality and safety in medical care for newborn infants and their families through education, research, and quality improvement. There were multidisciplinary teams—including parents—from 53 hospitals and several state-wide organizations working with faculty to fulfill the Collaborative's vision: "To be an inclusive Community of Practice that supports the pursuit of shared goals for improvement and the provision of exemplary care for all newborn infants and their families." Family involvement in quality improvement is an integral part of VON initiatives: VON had a family member on its Advisory Board, a family member served on the core faculty team, and families were active participants on the majority of improvement teams.
PFCC's Bev Johnson and Cezanne Garcia served as faculty for Team Up for Health, a California HealthCare Foundation initiative to develop partnerships with patients and families to advance the practice of self-management support (SMS) in six clinics throughout California, particularly those in underserved communities. Patients, families, staff, and physicians collaborated to improve educational resources to support active patient and family involvement in SMS, expand the use of information technology and social marketing, create linkages with community resources, and re-design clinic processes and workflow.
In 2008, Bev Johnson served on the Planning Committee, and as a presenter, for the California HealthCare Foundation statewide meeting, Chronic Disease Care: Better Ideas in Action. The three-day meeting drew a large attendance and included doctors, nurses, other health care providers, and patient leaders/advisors. A special focus of the meeting was to hear from patients who shared information about managing chronic diseases and specific strategies for better care.
Patient- and family-centered care is a strategic priority for military medicine in the United States Armed Forces. Between 2003-2009, the Institute provided training and technical assistance for advancing patient- and family-centered care and facilitating the development of partnerships with patients and families in selected military hospitals and clinics worldwide, working on-site in more than 23 military treatment facilities (MTFs) in Europe and across the United States. In 2009, the Institute worked with the United States Department of Veterans Affairs, providing training and technical assistance to nine medical centers and their affiliated clinics in VISN 7—which serves South Carolina, Georgia, and Alabama—to advance the practice of patient- and family-centered care.
In 2008, with funding support from the California HealthCare Foundation, the Institute for Patient- and Family-Centered Care published Partnering with Patients and Families to Design a Patient- and Family-Centered Health Care System: Recommendations and Promising Practices. This publication builds upon the deliberations and key recommendations that emerged from the 2006 meeting convened by the Institute for Patient- and Family-Centered Care in collaboration with the Institute for Healthcare Improvement and funded by the Robert Wood Johnson Foundation. Examples of best practices drawn from hospitals, ambulatory programs, medical and nursing schools, funders of health care, patient- and family-led organizations, and other health care entities are highlighted. These featured organizations are making exemplary progress in partnering with patients and families to enhance quality and safety, and to improve the experience of care.
IPFCC's President and CEO, Bev Johnson, participated in the 2008 American Board of Internal Medicine (ABIM) Foundation Forum From Rhetoric to Reality: Achieving Patient-Centered Care. The ABIM hosts an annual invitation-only meeting for health care leaders and key stakeholders to address an important, cross-cutting topic of shared concern. Unique to the 2008 meeting, the ABIM also invited a group of patients and caregivers to share their stories.
Also in 2008, the ABIM convened a task force to assess teamwork-identified by the ABIM as one of the most critical competencies in internal medicine. IPFCC's then Director of Special Projects, Julie Moretz, (now Associate Vice Chancellor for Patient- and Family-Centered Care at the University of Arkansas for Medical Sciences) participated in the 10-member working group comprised of both physicians and non-physicians. During the two-day meeting, the working group aimed to understand and assess competency in teamwork in internal medicine.
Bev Johnson co-chaired the Institute for Healthcare Improvement's 9th Annual International Clinical Office Practice Summit in 2008.Bev Johnson also served as faculty for the Institute for Healthcare Improvement's national collaborative on Taking Action to Transform Care at the Bedside (TCAB) from 2005-2008.
In 2006, IPFCC published Partnering with Patients and Families... A Roadmap for the Future. With support from the Robert Wood Johnson Foundation, IPFCC collaborated with the Institute for HealthCare Improvement to convene an invitational leadership panel of patients, families, and health care providers to respond to this briefing paper on patient and family partnerships in quality improvement and health care redesign.
IPFCC was a national partner for Remaking American Medicine, a four-part primetime television series broadcast on PBS in October and November 2006. The series told stories of change, focusing on the breathtaking advances being made in improving the quality of patient care and featured compelling profiles of providers and patients who are working together to change fundamentally the way health care is delivered in this country. The goal of Remaking American Medicine was to inspire and empower viewers, both members of the general public and health care professionals, to join in efforts to transform American health care.
Published in the Journal of Perinatology in 2006, the Consensus Committee on Recommended Standards for Newborn Intensive Care Unit (NICU) Design, on which IPFCC's Bev Johnson serves, issued recommended standards for NICU structure, lighting, noise and infection control, family support and other design considerations, along with supporting interpretations, references, and a glossary of terms.
With support from the Robert Wood Johnson Foundation and the California HealthCare Foundation, IPFCC expanded the programming on hospital design and facility design planning at its February 2005 International Conference in San Francisco. IPFCC added additional hospital design content to its website and, in September 2005, published a special issue of Advances focused on hospital design.
IPFCC staff members served on a leadership faculty team with the Institute for Healthcare Improvement (IHI), Rush Medical College and John H. Stroger Hospital of Cook County, White Mountain Research Associates, and the MacColl Institute for a three-year project funded in 2005 by the Robert Wood Johnson Foundation. The purpose of the Quality Allies project was to create a Collaborative Self-Management Support Learning Network aimed at improving chronic illness care. Patient and family leaders served on the National Advisory Council and on the core faculty team. Twenty teams participated in the collaborative and each team included patients and families as active members. This initiative was re-named New Health Partnerships: Improving Care by Engaging Patients.
An additional project followed this initiative to create and support a virtual learning collaborative and a virtual community. Nine teams participated in the virtual learning collaborative. The virtual community, New Health Partnerships, is an on-line community, the goals of which include supporting a patient- and family-centered approach to chronic illness care; building community-wide support, and offering resources and tools, to promote effective collaboration among patients, families, and health care practitioners for self-management; using up-to-date technologies to assist in improving chronic care; and providing tools and examples to evaluate the business case for collaborative self-management support. Made possible with funding from the Robert Wood Johnson Foundation, the Institute for Healthcare Improvement in partnership with IPFCC, the Institute for Healthcare Communication, and the MacColl Institute for Healthcare Innovation developed this virtual community, which now resides within IHI's website.
From 1998 through 2005, Institute staff served as faculty and consultants for three quality improvement projects for the Vermont Oxford Network (VON). VON is an international organization committed to improving quality and safety in medical care for newborn infants and their families through education, research, and quality improvement. Family-centered care was a specific area of focus for the second and third collaboratives. Families participated as consultants, faculty, advisory board members, and as members of improvement teams. Integration of family-centered care continues in VON's current efforts. In addition, IPFCC served as faculty for VON's iNIC/Q program—a web-based teleconference series designed to extend the learning opportunities to hospitals that were not part of the quality improvement collaboratives. More than sixty hospitals participated in iNIC/Q. Three published supplements of Pediatrics describe the work.
IPFCC participated in the revision of the criteria for the American Hospital Association-McKesson Quest for Quality Prize and IPFCC's Chief Executive Officer serves on the selection committee for this prestigious award. The revised award criteria now recognize the importance of the experience of care and partnership, and demonstrate the importance of linking hospital leadership agendas for safety, quality, and patient- and family-centered care.
The American Hospital Association (AHA) and IPFCC produced the Strategies for Leadership: Patient- and Family-Centered Toolkit distributed to the CEO of every U.S. hospital in 2004. The toolkit contains a video and companion discussion guide, a resource guide, and a self-assessment tool for hospitals. The entire toolkit can be downloaded from the AHA website.
Other IPFCC Collaborations:
IPFCC's President and CEO, Bev Johnson, has participated on the Consensus Committee to Establish the Recommended Standards for Newborn ICU Design, on the planning committee for the Annual Gravens Conference on the Physical and Developmental Environment of the High Risk Infant, and has also been a member, American College of Physicians' Center for Patient Partnership in Healthcare.
Learn more about the Institute's Current Initiatives.