Patients for Patient Safety – Statement of Case
How patient engagement became a priority.
In October 2004 the World Health Organization (WHO) officially launched a patient safety programme dedicated to “bringing significant benefits to patients in countries rich and poor, developed and developing, in all corners of the globe.” The patient safety programme (WHO Patient Safety) was established in response to Resolution WHA55.18, adopted by WHO’s 55th World Health Assembly in May 2002, which urged member states to pay the closest possible attention to patient safety and establish science-based systems for improving safety and the quality of care. The resolution reflected and advanced various calls to action to make patient safety a public health priority.¹
Including patients and families, consumers and citizens in patient safety work
Patients for Patient Safety, a core action within the WHO Patient Safety Programme, is designed to ensure that the perspective of patients and familiesshapes the important work of the programme and the global patient safety movement. Patients and caregivers see things that busy health-care workers often do not and PFPS believes safety can be improved if patients are included as full partners in reform initiatives, and learning can be used to inform systemic quality and safety improvements.
Partners in advancing safe and compassionate care
There is now growing discussion about implementing patient-centered, systems-based health care. Patients and families have contributed their personal stories of preventable harm in health care and the impact it had on their lives.. The voice of patients and families who have suffered preventable harm in healthcare is a powerful motivational force for health-care providers across the globe who wish, first, to do no harm.
However, patients have much more to offer than visceral reminders to health-care workers, administrators and policymakers of the victims of tragic medical errors. Important as that perspective is, a victim orientation does not position patients well as partners working with health-care providers to prevent harm. Indeed, the perception that patients and their families are helpless or antagonistic victims has served to distance them from playing meaningful roles in the development and implementation of patient safety work in the past and generated fear among some clinicians who would have otherwise engaged in partnership. Patients and their families should be able to expect openness and honesty when things go wrong, and to be involved in the investigation to find the root causes.
At the health-care service delivery level, consumers who wish to contribute knowledge gained or lessons learned have often found few effective pathways for doing so. Particularly after health-care accidents occur, a “wall of silence” may descend and productive interaction may cease. When consumers register concerns, their actions can be perceived as adversarial threats or unscientific anecdotes that lack evidence, rather than potential knowledge contributions.
At the policymaking level, consumer participation can be marginalized, with the assumption that consumers are 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 patient safety as witnesses to every detail of systems failures from the beginning to end.
Today, however, health-care professionals and policy-makers, in increasing numbers, are recognizing the importance of patient involvement and there are examples of successful engagement and positive change from around the world.
Patients and consumers who choose to partner with health-care policy makers and providers are highly knowledgeable, motivated and eager to contribute. Patient champions approach their role with a profound sense of responsibility and desire to help create a health-care system that is safe, honorable and compassionate for patients and health-care workers alike. They challenge health care to be truly patient-centered and to partner to help make care better.
Patients for Patient Safety – Building an infrastructure for active, informed global partnership
Working through the World Health Organization, Patients for Patient Safety has developed a collective voice for patients and families interested in sharing their experience and lessons learned in order to improve safety. Together and integrated with the other action areas of the WHO Patient Safety Programme, PFPS will develop opportunities for the patient voice to be heard and for participation in creating public awareness about inherent health-care risks, educating the public about systems approaches to risk management, reporting errors or health-care failures in ways that contribute to systemic learning, disseminating research and sharing solutions that can prevent patient harm.
PFPS invites patients, providers and participating nations interested in productive change through partnership to join us in carrying forward this important and transformative work.
Click on the link below if you would like to express an interest in getting involved in the work of Patients for Patient Safety and to learn more about the programme.
¹ The IOM estimated medical error to be between the 4th to 8th largest causes of preventable death in the United States. Kohn LT, Corrigan JM, Donaldson M, Eds. To Err Is Human: Building a Safer Health System, Washington, DC, National Academy of Sciences, 1999.