Consumers as Partners: Building a Global Network of Consumer Partners
May / June 2006
Consumers as Partners
Building a Global Network of Consumer Partners
In October 2004, the World Health Organization (WHO) officially launched the World Alliance for Patient Safety (World Alliance) to raise awareness and political commitment to improve the safety of care and to facilitate the development of patient safety policy and practice in all WHO member states. Chaired by Sir Liam Donaldson, chief medical officer of the United Kingdom Department of Health, the World Alliance was established in response to Resolution WHA55.18, adopted by WHO’s 55th World Health Assembly in 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 (WHO, 2002).
Establishment of Patients for Patient Safety
From the beginning, the role of real patients and their family caregivers was deemed to be the core component of the World Alliance. A first step was the invitation made to Susan Sheridan, an American whose family has experienced the impact of medical error, to participate in a technical briefing for WHO delegates. Sheridan (a co-author of this article) shared with WHO delegates her own personal experiences of the consequences of medical errors and how these experiences led her to co-found Consumers Advancing Patient Safety (www.patientsafety.org), a consumer-led organization dedicated to progress through forward-looking partnership. At the close, Sir Liam stressed the importance of consumer involvement and left the audience with the following thought: “To err is human; to cover up is unforgivable; and to fail to learn is inexcusable.”
Patients for Patient Safety was established by WHO shortly thereafter to ensure that the experience, perspective, and wisdom of consumers in both developing and developed countries is infused in the work of the World Alliance. It is one of six action areas of the World Alliance. The other action areas include:
- Global Patient Safety Challenge, focusing on healthcare associated infection;
- Taxonomy for Patient Safety, ensuring consistency in concepts, principles, norms, and terminology used in patient safety work;
- Research for Patient Safety, developing a rapid assessment tool for use in developing countries and undertaking prevalence studies of adverse effects;
- Solutions for Patient Safety, promoting existing interventions in patient safety and coordinating international efforts to develop solutions; and
- Reporting and Learning, generating best practice guidelines (WHO, 2005a).
In addition, Patients for Patient Safety was developed to be a collective voice for consumers with patient safety concerns, who are forward looking and interested in partnering with each other as well as with providers and policymakers to make a difference.
In early 2005, a Statement of Case was developed (WHO, 2005b), which emphasized the role that consumers already were playing in the global patient safety movement:
When patients and families are included in gatherings of patient safety stakeholders, their primary contributions have been to share stories of preventable injury in healthcare and their impact on patients’ lives. We are gratified to have made this contribution. The voice of patients and families who have suffered preventable medical injury is a powerful motivational force for healthcare providers across the globe who wish, first, to do no harm.
Building on the assumption that patients and their lay caregivers see and experience gaps in the safety net that busy healthcare providers and healthcare systems often do not see, the Statement outlines future roles for motivated consumer partners:
[P]atients have much more to offer than visceral reminders to healthcare workers, adminis-trators and policymakers that we are victims of tragic medical errors. Important as that per-spective is, a victim orientation does not position us well as partners working with healthcare providers to prevent harm…
Patients and consumers who choose to partner with healthcare policy makers and providers are highly knowledgeable, motivated and eager to contribute. We approach our role with a profound sense of responsibility and desire to help create a healthcare system that is safe, honorable and compassionate for patients and healthcare workers alike. We are here to challenge healthcare to be truly patient-centered—especially when it is resistant to change or slow to make safer care a priority—but most fundamentally, we are here to partner to help make care better.
Formational Workshop, London 2005
The inaugural event for Patients for Patient Safety was a workshop held in conjunction with a European Union (EU) Patient Safety Summit held in London from November 27 to December 1, 2005, which convened international policymakers, experts, clinical leaders, and patient advocates. A powerful message of the EU Summit was to hear directly from patients and families who had been seriously harmed by healthcare and, despite these tragic experiences, are working together in partnership with providers and health policymakers to ensure the future safe delivery of healthcare services.
In August 2005, Patients for Patient Safety issued a call for applications from interested patients and consumers in developed, developing, and transitional nations from around the world. The recruitment process was designed to identify people with:
- significant experience interacting with healthcare providers as a patient or the caregiver of a patient;
- proven experience and success in partnering with others and demonstration of capacity to advocate and catalyze action to improve patient safety;
- the ability to articulate their personal stories in a way that was future-oriented, demonstrating a desire to move beyond tragedy for the purpose of co-creating a safer future; and
- commitment to being a “change agent.”
More than 120 applications were received and reviewed by the Patients for Patient Safety Steering Group. Twenty-one consumer “champions” from 19 nations were selected as workshop participants after careful review of the applications, which revealed rich and varied experience. The champions included patients, family members, lay caregivers, journalists, public servants, and other patient advocates.
In addition to orienting consumers to the other World Alliance work strands, the workshop was designed to model partnership between consumers, providers, and researchers. Guest experts made presentations, coached consumer participants in their work, and participated in question-and-answer sessions. Workshop participants offered input to the other work strand leads and continued to refine their own vision and mission statement, published as “The London Declaration” (WHO, 2006). In addition, several workshop participants were speakers or panelists during the general sessions of the EU Patient Safety Summit. A message that resonated consistently throughout all the featured patient stories was partnership: patients, families, and caregivers working together to create safer global healthcare systems.
Next Steps in Growing a Global Community of Champions
The London Declaration embodies both a vision and a feeling of palpable hope. As would be expected in an assembly of people drawn from six continents, workshop participants brought to the event a range of life experiences, personalities, skills, ideas, and ways of expressing them. There was an exciting and creative tension between those who came to the workshop with a “human rights” perspective on patient safety and those whose orientation was more that of a “proactive partner.” In the wrap-up session, several people stated that they had gained a deeper understanding that a tragic experience does not have to stop with the assertion or defense of human rights; it is also learning that can be translated into change and improvement. This synergy of approaches is elegantly articulated in The London Declaration, which reflects a real step forward among workshop champions in forming a forward-looking partnership—perhaps even some healing for those whose unfortunate experiences or good ideas had not been closely listened to or well appreciated in other settings.
This process has just begun, but The London Declaration provides direction and inspiration that will shape planning work that can be transformative. Next steps involve regional events around the world, which began with a May 2006 workshop immediately preceding the National Patient Safety Foundation Congress for consumers recruited from throughout North and South America. A similar event is being planned in conjunction with Canada’s Halifax 6 Conference in October 2006.
Dare we hope that consumer champions for patient safety—unafraid to speak the truth of our experience, and welcomed rather than avoided when we do—are the next frontier of the patient safety movement? Our hearts and minds are set on it.
The isolation I once felt has dissipated. I know we will move forward and multiply like the loaves and fishes.
— Margaret Murphy, Ireland
Patients for Patient Safety Formational
Workshop Participant
Susan Sheridan’s introduction to safety issues—and her motivation to make a difference—came through grave medical errors, which led to her son’s permanent disability from untreated newborn jaundice, known as kernicterus, in 1995 and her husband’s death in 2002 from failure to communicate a diagnosis of cancer. She is co-founder of Parents of Infants and Children with Kernicterus (PICK), a nonprofit devoted to preventing kernicterus and realizing the full potential of people who have it, and co-founder of Consumers Advancing Patient Safety (CAPS), a 501(c)(3) organization dedicated to fostering the role of consumer as proactive partner. She also chairs the Patients for Patient Safety track of the World Alliance for Patient Safety, launched by the World Health Organization (WHO) in 2004. Sheridan is a member of PSQH’s Editorial Advisory Board and may be contacted at ssheridan@patientsafety.org.
Mitchell Dvorak was active in establishing Consumers Advancing Patient Safety (CAPS), and was named its founding executive director in 2003. CAPS is a consumer-led non-profit organization that envisions a healthcare system that is safe, compassionate and just. The mission of CAPS includes being a collective voice for individuals, families and healers who wish to prevent harm in healthcare encounters through partnership and collaboration. Dvorak worked with the CAPS board to successfully secure initial funding, build the mission and agenda for the organization through consumer outreach, and manage all aspects of the organization’s launch in 2003. Dvorak has extensive experience working with non-profit organizations in the healthcare and patient safety fields, including the National Patient Safety Foundation, American Medical Association, and the North Dakota Medical Association. He may be reached at mdvorak@patientsafety.org.
Martin Hatlie is president of Partnership for Patient Safety (p4ps), a patient-centered initiative dedicated to advancing the reliability of healthcare systems worldwide, and co-editor of The Patient Safety Handbook (Jones & Bartlett 2003). Previously, Hatlie was a lobbyist for the American Medical Association (AMA) focusing on tort reform. In 1997, he coordinated the AMA’s launch of the National Patient Safety Foundation and served as its founding executive director, and in 2003, Hatlie co-founded CAPS and serves on its board. He also serves on the Sentinel Event Advisory Group of the Joint Commission on Accreditation of Healthcare Organizations, the Steering Group of the Patients for Patient Safety work strand of the WHO World Alliance for Patient Safety, and the Advisory Board of Parents of Infants and Children with Kernicterus. Formerly, he has served on the governing boards of the Anesthesia Patient Safety Foundation and the American Tort Reform Association. Hatlie is a member of PSQH’s Editorial Advisory Board. Hatlie may be contacted at mhatlie@p4ps.org.
References
World Health Organization (WHO). (2002). Quality of Care: Patient Safety, Fifty-Fifth World Health Assembly, Resolution WHA55.18, www.who.int/gb/ebwha/pdf_files/WHA55/ewha5518.pdf
World Health Organization (WHO). (2005a). The Launch of the World Alliance for Patient Safety Forward Programme 2005, www.who.int/patientsafety/launch/en/index.html
World Health Organization (WHO). (2005b). Patients for Patient Safety—Statement of Case. www.who.int/patientsafety/patients_for_patient/statement/en/index.html
World Health Organization (WHO). (2006). Patients for Patient Safety—The London Declaration, www.who.int/patientsafety/information_centre/Final_London_Declaration_Feb06.pdf
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We,Patients for Patient Safety, envision a different world in which healthcare errors are not harming people. We are partners in the effort to prevent all avoidable harm in healthcare. Risk and uncertainty are constant companions. So we come together in dialogue, participating in care with providers. We unite our strength as advocates for care without harm in the developing as well as the developed world.