June/July 2007 Issue #10

Up to the Minute Information about Patient- and Family-Centered Care OnLine
Margaret Murphy: Mom, Health Advocate, Change Agent
Just How International is The 3rd International Conference?
Meet Bev Johnson, Founder, President and CEO, the Institute of Family-Centered Care
Patient and Family Advisory Council List Serve (PFAC)
The Institute for
Family-Centered Care
7900 Wisconsin Ave, Suite 405
Bethesda, Maryland 20814
P: 301 652-0281
F: 301 652-0186
E: institute@iffcc.org
W:  www.familycenteredcare.org
Up to the Minute Information about Patient- and Family-Centered Care OnLine

The Institute for Family-Centered Care serves as a resource for patient and family leaders, clinicians, administrators, educators, researchers, and facility designers who are interested in advancing the practice of Patient- and Family-Centered Care. The Institute is proud to offer many Tools for Change.

Our Free Downloads provide many useful tools for fostering collaboration with patient and family advisors.

Get copies of all the previous e newsletters "Pinwheel Pages".

Check out the Useful Links and Supporting Evidence Sections for answers to your questions about evidence-based family-centered care.


Fixing the problems that plague health care in the United States, most experts now agree, demands system-wide solutions and meaningful collaboration with patient and family members. With support from the Robert Wood Johnson Foundation, the Institute for Family-Centered Care collaborated with the Institute for Healthcare Improvement and convened an invitational expert panel to respond to the briefing paper: A Roadmap for the Future: Partnering with Patients and Families To Design a Patient- and Family-Centered Health Care System.

As a follow-up to this extraordinary meeting, the Institute for Family-Centered Care, with funding support from the California HealthCare Foundation, is developing a comprehensive report based on the recommendations that emerged from the participants. Examples of best practices that illustrate many of the recommendations are included.

The purpose of the report is to provide guidance to all key constituents in healthcare--patients and families, leaders, administrators, educators, researchers, providers, advocates, foundations, and payers--for advancing patient- and family-centered care and building the partnerships among all groups to enhance safety and quality. Recommendations and examples highlight partnerships across a variety of endeavors including, redesign, quality improvement, professional education, patient safety initiatives, among others.

The report will be available late in the summer of 2007. Please check the Institute's and the California HealthCare Foundation's websites for availability.
Margaret Murphy: Mom, Health Advocate, Change Agent

Ten years ago, if you had told Margaret Murphy that she would be the keynote speaker at a conference in the United States, speaking to an audience of about 800 doctors, nurses, hospital administrators, health care professionals, patients, parents, family members, and other caregivers, she would have laughed nervously in disbelief. Thinking that you had lost your mind, she would have asked what possible circumstances could bring this about? At that time, she was a wife and a mother, the administrative assistant for the Presentation Brothers Religious Congregation, and working at the local university. But the death of Margaret's 21-year-old son Kevin, in 1999, has changed her life and what she now perceives of her future. It also brings her to the United States to tell Kevin's and her story at The 3rd International Conference on Patient- and Family-Centered Care.

Kevin Murphy died as a result of a series of missed diagnoses, lost opportunities, and inappropriate medical care. Kevin was hospitalized with hypercalcaemia, a relatively common clinical problem that most often is related to hyperparathyroidism. Prognosis is excellent when the underlying cause is identified and treatment is initiated promptly.

Kevin Murphy (left) Margaret Murphy & her first grandchild, Andrew (right)

For five years, the Murphy family unwaveringly sought the answer to the question, "Why did Kevin die?" Meetings with providers, when granted, to address this question characteristically resulted in aloofness, closing ranks, and protestations of loyalty to colleagues, to the organization, and to a flawed system. The Murphys' previous high regard and respect for the medical community and their hope of learning the truth was shattered. Instead, they felt doubly betrayed by the lack of professionalism and the absence of honorable conduct and were forced to undertake legal action to obtain the answers they so desperately needed. The ensuing successful court hearing brought the case into the public domain and eventually to the attention of the World Health Organization.

One day in 2004, more than five years after Kevin's death, "out of the blue" Margaret received a phone call from the World Health Organization (WHO). To her amazement, this led to a meeting with none other than Sir Liam Donaldson, the Chief Medical Officer of the United Kingdom Department of Health and Chair of the World Alliance for Patient Safety.

Margaret calls this her magic moment. She met with Sir Liam, he listened, he acknowledged the tragedy, he didn't offer excuses, and he enumerated on his fingertips the number of lost opportunities to save Kevin's life, saying that any one of them would have been enough. For the first time in five years Margaret felt heard and hopeful. She returned to Ireland a considerably healed woman, conscious of the potential to be part of the change process that would prevent re-occurrence and improve health care for future patients.

She was asked to share her story and she willingly did. She was uncertain if it would make a difference, wondered about its value to anyone other than herself, and questioned the impact it might make on an uncaring system. But she discovered that systems are made of people, people can change systems, and her story--Kevin's story--brought about a willingness to change.

Margaret was invited to join the Steering Group of the Patients for Patient Safety (a Strand of the World Alliance for Patient Safety) and was asked to participate at the Patient Safety Summit to be held in London.

Over the course of three days, more than 500 policymakers, experts, clinical leaders, and patient advocates met together in London. Led by Sir Liam Donaldson, an interactive program of international and European speakers introduced participants to the latest ideas in education for patient safety, research tools, and innovations from the safety work of other industries. A powerful message of the Summit was to hear directly from patients who themselves or through their family had been seriously harmed by health care. Despite their disastrous experience, or because of it, patients and their families came to the Summit to tell the panelists, speakers, and all participants that working as partners would be the only way to ensure that care for future patients is much safer.

Sir Liam acknowledges that, "Although there are notable exceptions, at the policymaking level consumer participation tends to be marginalized, often by well meaning leaders who assume consumers to be unable to appreciate the complexity of health care. Such an approach fails to take into account that many consumers offer the richest resource of information related to medical errors as many have witnessed every detail of system failures from the beginning to end."

Under Sir Liam's leadership of the WHOs World Alliance for Patient Safety, Patients for Patient Safety was established. Margaret is one of the eight members charged with guiding the work of the Patients for Patient Safety program. Chaired by Susan Sheridan, Co-founder, Consumers Advancing Patient Safety (CAPS), the Patients for Patients Safety Steering Committee will assist and support efforts to develop a collective voice for consumers, citizens, patients, or lay caregivers who are interested in sharing their experience and lessons learned in order to improve safety. They foster the role of consumers as partners in the delivery of care and contribute to policymaking activities that seek to advance systems-based, patient-centered care.

Today Margaret Murphy still describes herself as a wife and mother. She also is:

o a Member of the Steering Committee of the Patients for Patient Safety strand of the WHO World Alliance for Patient Safety;

o a Member of the inaugural steering committee of the World Alliance for Patient Safety Collaborative Centre for Patient Safety Solutions;

o one of two patient representatives appointed by the Irish Minister for Health and Children to The Commission for Safety and Quality Assurance in Healthcare;

o a Council Member of the Irish Society for Quality and Safety in Health care;

o a Board Member of the Irish Health Services Accreditation Board and also acts as a consumer surveyor in hospital accreditation;

o a Member of the Patient Forum, Cork University Hospital, Ireland;

o a Member of the Advisory Committee, Postgraduate Medical School, University of Limerick, Ireland;

o a Member of the Irish Medical Council's steering committee Professional Practice Review Program for General Practitioners; and

o associated with the Irish Patients Association and the advocacy group Patient Focus.

In 2004, after a five-year battle and search for the truth, the High Court found in the Murphys' favor and awarded them a sum of money, which they donated to charity. Margaret said the case was always about the search for truth; it was never about money since no sum of money exists that would equate to Kevin.

Please join us on the opening day of The 3rd International Conference on Patient- and Family-Centered Care as Margaret talks about her journey, explains the changes that are occurring in the Irish Health Service, and discusses the steps being taken to promote active patient involvement and collaboration worldwide.

Just How International is The 3rd International Conference?

The 3rd International Conference On Patient- and-Family-Centered Care kicks off on Monday morning, July 30, 2007, with an Opening Plenary Session delivered by Margaret Murphy, Patient Advocate, and Member of the World Health Organization's World Alliance for Patient Safety. Ms. Murphy is from Cork, Ireland.

Ms. Murphy asks participants to accompany her as she retraces her family's experience with the Irish Healthcare that lead to her son's wrongful death. Her perspective, after the devastating and unexpected loss of her son, will take you on a terrifying journey that none of us expects or desires to encounter when receiving medical care. She will discuss how she focuses her efforts to create partnerships with providers that will have a long-lasting positive impact on quality and safety in medical care worldwide.

Jack Davis, President and Chief Executive Officer of the Calgary Health Region (Calgary, Alberta, Canada) leads off on Tuesday morning, July 31, 2007, asking the question, "Family-Centered Care: Patient Safety and Patient Experience: Is There a Difference"? Mr. Davis will describe three of the Calgary Health Region's most significant accomplishments in the area of patient- and family-centered care: the integration of family-centered care in the design of the newly opened Alberta Children's Hospital and South Health Campus, the establishment of a region-wide Patient and Family Advisory Council, and the creation of a system-wide position, Vice-President for Patient Experience. He will discuss how integrating patient- and family-centered care came about and its impact on patient satisfaction and safety.

Throughout the Conference's three days, Canada's 10 provinces and 3 territories, are well represented by presenters from Nova Scotia in the East, to Vancouver in the West, and many others in between the coasts.

From Nova Scotia, Liz Crocker, Co-Author of Privileged Presence and Honorary Trustee of the IWK Foundation, and Donna Thompson, Parent Leader and Health Care Volunteer at IWK Children's Hospital, will use the power of story-telling to reveal the quality of care and to provide practical techniques to foster collaboration between patients and providers through stories.

The Winnipeg Regional Health Authority uses the input of a Patient and Family Advisory Council for patient safety initiatives. Corrine Stevens, BA, Patient-Family Voice Facilitator; Jillian Paulmark, BHEc, RD, Co-Chair Patient Safety Advisory Council; and Ed Mendoza, B.Com., Patient Safety Advisory Council, Winnipeg Regional Health Authority, Winnipeg, Canada, will discuss partnerships with patients on consumer-driven research projects and the need for meaningful patient and family input into strategic planning and decision-making processes.

A group from Vancouver, British Columbia says, "Thanks for Asking! A Family-Initiated Adverse Event Reporting System." Jeremy Daniels, Research Engineer; Donna Tack, Co-Chair, Partners in Care; and Mark Ansermino, Pediatric Anesthesiologist, Director of Research, Department of Anesthesiology, BC Children's Hospital, Vancouver, British Columbia, Canada, will describe work to develop a tool for families to identify and report adverse events. The tool, associated legal and ethical considerations, and preliminary data from the tool's usage will be discussed.

Projects from other countries also will be presented.

From Qatar's New Sidra Medical and Research Center: How Patient- and Family-Centered Principles of Design Support International Staff Recruitment. Travis Leissner, AIA, Project Director, Executive Architect, Ellerbe Becket, Inc., Minneapolis, MN; Mark Shoemaker, AIA, Design Principal, Pelli Clarke Pelli Architects; Bruce Komiske, Project Director, KEO International Consultants, Project Management; and Qatar Foundation, Client, Doha, Qatar, will describe how the Qatar Foundation is delivering a first-class level of personal service and amenities in a new teaching hospital environment. It is paramount that the design becomes a recruiting tool for international staff. The design team utilized strategic client and user input as well as an array of specialists.

In Israel, personalized Gantt Charts are used as a tool for parents' active participation in the discharge process from the NICU. Ehud Zmora, MD, MHA, Professor of Pediatrics and Neonatology; Rina Marku, RN, BN, MPH, Nursing Director, Neonatal Services; and Hagit Raz, RN, BN, Director of Nursing, NICU, Soroka Medical Center, Beer Sheva, Israel, focus on a tool that facilitates parent participation in their premature infant's discharge management from NICU to home. The tool supports increases in parental self-confidence before they leave the NICU.

Because the Yorkshire Neonatal Network believes that staying attuned to the needs and wishes of the service-user is fundamental to its success, the Neonatal Network engaged with families to elicit their experiences and perceptions of care through a two-phased study using questionnaires and focus groups. A review of this study highlights the need for greater future engagement with families to ensure facilitation of more effective, individualized delivery of care. Families' Perceptions and Experiences of Neonatal Care Delivery Within the Yorkshire Neonatal Network: What are They? Gwynneth Bissell, MHSc, Senior Nurse Neonatal Education, Yorkshire Neonatal Network, Leeds, Yorkshire, United Kingdom.

The Concept of Partnership in Care with Families and the Rights of Sick Children in Hospitals in Europe is the subject of the session presented by Sylvie Rosenberg-Reiner, MD, Pediatrician and Anesthesiologist, Assistant Professor, Dept. of Anesthesiology, H˘pital des Enfants Malades, Assistance Publique, Paris-France, European Association for Children in Hospital (EACH), France. The implementation of the rights of sick children raises problems and questions in the everyday routine of a hospital. The 20 years of experience obtained by EACH and its members in 15 European countries provide substantial keys for action.

There are more international presentations. This is just a sampling to whet your appetite.

There's still time to register on line.

Meet Bev Johnson, Founder, President and CEO, the Institute of Family-Centered Care

Beverley H. Johnson, President and Chief Executive Officer, founded the Institute for Family-Centered Care, in 1992. Bev's vision--to make patient- and family-centered care the standard of care for patients of all ages in all settings where they receive care--is her passion.

Bev had polio as a child and received care in Children's Hospital in Washington, DC at the end of the polio epidemic. That early experience was the driving force in Bev becoming a nurse; for many years, she worked in pediatrics, and focused her professional attention on children's health. After working as a pediatric nurse, in various clinical and administrative capacities at Children's Hospital National Medical Center in Washington, DC, Bev served as the Executive Director for the non-profit organization, The Association for the Care of Children's Health (ACCH).

The stories from Bev's life inform her work and fuel her passion. In addition to her childhood hospitalization, Bev's experiences as a mother--giving birth and caring for her own children--and subsequently caring for her parents and in-laws, shape her belief that all people: childbearing women, adults in primary care, people with chronic conditions, as well as the aging population--not just children--would benefit from a patient- and family-centered approach. In providing care for others, Bev learned the strengths of the health care system, and its gaps and inadequacies. Over time, Bev learned the importance of patient- and family-centered care, not only in pediatric practice, but also across the continuum of care.

In founding the Institute for Family-Centered Care, Bev brought together over 40 leaders in health care from across the country, including patient and family advisors, physicians, hospital leaders, public health professionals, members of academia, and providers of ambulatory care. Bev sought their advice to set up the visionary agenda for the Institute.

Bev brings to the Institute over 25 years of experience. In addition to leading non-profit organizations, and having clinical and administrative experience, Bev also served as a hospital trustee, and as a trustee for other organizations. She served as the project director of numerous federal and private foundation grants. Bev has provided technical assistance and consultation to over 150 hospitals and health systems, federal, state, and provincial agencies, quality improvement initiatives, and community organizations on advancing the practice of patient- and family-centered care and creating partnerships with patients and families.

Bev is the co-author of books, numerous articles, and other publications on patient- and family-centered practice, planning, and program development in pediatrics, newborn intensive care, maternity care, geriatrics, and other aspects of adult health care. Most recently, she co-authored with her friend and colleague, Liz Crocker, the book, Privileged Presence: Personal Stories of Connections in Health Care, released in the fall of 2006. Bev also produced several award winning documentary films, such as First Do No Harm and To Prepare a Child.

Bev currently serves as a member of the selection committee for the American Hospital Association McKesson Quest for Quality Prize; a member of the Consensus Committee to Establish the Recommended Standards for Newborn ICU Design; a faculty member for the IHI Transforming Medical Surgical Care Learning and Innovation Community; and a core faculty member for New Health Partnerships: Improving Care by Engaging Patients, an initiative of the Institute for Healthcare Improvement, funded by the Robert Wood Johnson Foundation.

We are proud of Bev's outstanding contributions to improve the quality and safety of health care and her tireless effort to advance the practice of patient- and family-centered care. Bev received the 2007 Stan and Mavis Graven Award at the 20th Annual Gravens Conference on the Physical and Developmental Environment of the High-Risk Infant. The award acknowledges the contributions of an individual who has shown outstanding leadership, innovation, and creativity in enhancing the physical and developmental environments for high-risk infants and their families. Bev Johnson also received the 1992 Lloyd Bentsen Award and the 1990 Humanitarian Award from Pediatric Nursing.

Bev enjoys spending time with her husband, four adult children (two are writers and two are health care professionals) and their spouses, and her five grandchildren!

Patient and Family Advisory Council List Serve (PFAC)

This is a link to the list serve for anyone interested in the work of patient and family advisory councils. Membership is not limited to family members or patients. Health care staff are welcome. Discussion covers all topics related to starting and sustaining patient and family advisory councils, as well as issues related to promoting patient- and family-centered care in a hospital or medical center.

This email discussion group was created as a way for people to ask for and share information and ideas as they work to build or sustain patient and family advisory groups at their medical center. It grew from an idea that many patients and family advisors had discussed whenever they met at conferences--a method for improving collaboration among themselves.

The list is open to anyone who is interested in starting a patient or family advisory council for a hospital, who is currently a patient or family advisor, or who is a member of or leads one of these groups. Note that membership is not limited to family members or patients; health care staff who are members, leaders, or interested in starting these councils are also welcome.

To post a message to all the list members, send email to pfacnetwork@listserve.com. To see the collection of prior postings to the list, visit the PFACnetwork Archives. Since the archive is only available to list members, you must be a subscriber and use your password to view archived messages.

Once again, The Institute extends a large thank you to all our continuing Pinwheel Sponsors and Welcome Aboard to those just joining us:


Children's Hospital at Providence, Anchorage, AK

Children's Medical Center, Dallas, TX

Dana Farber Cancer Institute, Boston, MA

Evergreen Healthcare, Kirkland, WA

Hasbro Children's Hospital/Rhode Island Hospital, Providence, RI

IWK Health Center, Halifax, Nova Scotia

Lucille Packard Children's Hospital at Stanford,
Palo Alto, CA

Maimonides Medical Center, New York, NY

MCG Health System, August, GA

Miami Children's Hospital, Miami, FL

North York General Hospital, Toronto, ON

Presbyterian Healthcare Foundation,
Albuquerque, NM

Scotsdale Health System, Scotsdale, AZ

Sunnybrook and Women's College Health Sciences Center, Toronto, Ontario

The Children's Hospital of Philadelphia,
Philadelphia, PA


Children's Hospital Boston,
Boston, MA

Children's Hospital of Los Angeles,
Los Angeles, CA

La Rabida Children's Hospital,
Chicago, IL

North Carolina Children's Hospital,
Chapel Hill, NC

Texas Children's Hospital, Houston, TX

The Children's Hospital, Denver, CO


Perkins and Will,
Atlanta, GA

Caring Pages, Chicago, IL

Caring Bridge, Eagan, MN

San Francisco, CA


Bethesda, MD

Legacy Teaching Products,
Cambridge City, IN

To learn how YOU can become a Champion of Patient- and Family-Centered Care, click below.