Profiles of Patient and Family Advisors and Leaders
Steering Committee Member, Patients for Patient Safety, World Health Organization (WHO) World Alliance for Patient Safety: Margaret Murphy
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. And 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 brought 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.
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 healthcare 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 healthcare. 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 systems failures from the beginning to end."
Margaret's first grandchild, Andrew
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:
- a Member of the Steering Committee of the Patients for Patient Safety strand of the WHO World Alliance for Patient Safety;
- a Member of the inaugural steering committee of the World Alliance for Patient Safety Collaborative Centre for Patient Safety Solutions;
- one of two patient representatives appointed by the Irish Minister for Health and Children to The Commission for Safety and Quality Assurance in Healthcare;
- a Council Member of the Irish Society for Quality and Safety in Healthcare;
- a Board Member of the Irish Health Services Accreditation Board and also acts as consumer surveyor in hospital accreditation;
- a Member of the Patient Forum, Cork University Hospital, Ireland;
- a Member of the Advisory Committee, Postgraduate Medical School, University of Limerick, Ireland;
- a Member of the Irish Medical Council's steering committee Professional Practice Review Programme for General Practitioners; and
- 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.