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Past Initiatives and Collaborations

The Institute 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, the Institute facilitates patient- and family-centered change in all health care settings. The Institute 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, the Institute works on collaborative endeavors with many organizations and agencies. Here is a sampling of initiatives from the Institute's last decade:

San Diego HiltonThe Institute 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.

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.

TricareUnited States Department of Veterans AffairsPatient- 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.

Partnering with Patients and Families to Design a Patient- and Family-Centered Health Care SystemIn 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.

The Institute'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. The Institute's Director of Special Projects, Julie Moretz, 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.

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.

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.

Partnering with Patients and Families... A Roadmap for the Future

In 2006, the Institute published Partnering with Patients and Families... A Roadmap for the Future. With support from the Robert Wood Johnson Foundation, the Institute for Patient- and Family-Centered Care 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.

Remaking American MedicineThe Institute 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.

In 2006, the Consensus Committee on Recommended Standards for Newborn Intensive Care Unit (NICU) Design-on which 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, the Institute expanded the programming on hospital design and facility design planning at its February 2005 International Conference in San Francisco. The Institute added additional hospital design content to its website and, in September 2005, published a special issue of Advances focused on hospital design.

Institute 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.

New Health PartnershipsAn 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 the Institute for Patient- and Family-Centered Care, the Institute for Healthcare Communication, and the MacColl Institute for Healthcare Innovation developed this virtual community, which now resides within IHI's website.

Vermont Oxford NetworkFrom 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, the Institute 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.

The Institute participated in the revision of the criteria for the American Hospital Association-McKesson Quest for Quality Prize and the Institute'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..

Strategies for Leadership: Patient- and Family-Centered Toolkit

The American Hospital Association (AHA) and the Institute 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.

In 2004, the Institute collaborated with the Eunice Kennedy Shriver Center at the University of Massachusetts Medical School to develop and teach a federally funded, on-line course on family-centered care for health care professionals and family leaders interested in public health agencies. The Institute developed the curriculum, lectures, accompanying resources, and interactive exercises and served as faculty for this six-week course.

In 2003, the American Hospital Association (AHA) invited the Institute to collaborate in support of the implementation of the Institute of Medicine's (IOM) 2001 report: Crossing the Quality Chasm: A New Health System for the 21st Century. The Institute provided technical assistance to hospital leaders in AHA state associations. Institute staff authored a series of articles on patient- and family-centered care in AHA News, the organization's biweekly newsletter that focused on the IOM's six aims for change in health care.

Family-Centered Care: Putting It into Action, the SPN/ANA Guide to Family-Centered Care

In 2003, the Society of Pediatric Nurses (SPN) and the American Nurses Association (ANA) published Family-Centered Care: Putting It into Action, the SPN/ANA Guide to Family-Centered Care. This publication provided an extensive review of the literature and offers nurses practice recommendations for a family-centered approach to care, which SPN defines as "the standard of care for pediatric nursing." The Institute reviewed this publication, had the opportunity to shape some of its focus, and wrote the preface. The Institute's hospital self-assessment inventory is included in the appendix.

In 2002, the American Academy of Pediatrics (AAP) Committee on Hospital Care invited the Institute to collaborate in the development of a policy statement on family-centered care. The AAP's Board of Trustees and all of AAP's committees and liaisons approved the policy statement, "Family-Centered Care and the Pediatrician's Role," and the AAP published the policy statement in the September 2003 issue of Pediatrics. The Institute and the AAP continue to collaborate to update this policy including the most recent 2010 review.

Learn more about the Institute's Current Initiatives.