The U.S. Healthcare system is facing severe challenges. Along with increases in healthcare spending and financing, the challenges include overcoming disparities in access to healthcare, improving health literacy, meeting the needs of an expanding population of older Americans and a growing population with chronic conditions, improving patient safety, overcoming workforce shortages, and integrating technology appropriately. In fact, most healthcare experts agree that the healthcare system needs to be fully redesigned. There is a growing awareness that to achieve the best outcomes, patients and families must be more actively engaged in decisions about their healthcare and must have better access to information and support. Patients and families must be integral members of the team redesigning the system to achieve patient-centered care and improve the healthcare of individuals and the community at large.
In 1993, Gerteis and colleagues pioneered the idea that patient- and family-centered care requires more than just improving customer satisfaction. They suggest we shift our focus from technical problem-solving to understanding the experiences of others in order to become part of the subjective experience rather than mere observers. The new step requires asking the patient what matters most to them; how they want to share in decision-making; how much information they want to know about their clinical condition; and which unique values, needs, and preferences they want to be honored in their care. This step requires active listening and the investment of time, which is a challenge for busy clinicians and staff. This shift in thinking is also difficult because most healthcare providers think they are already providing patient- and family-centered care; but, are they really?
In "Crossing the Quality Chasm," the Institute of Medicine [IOM] (2001) proposed six aims for improvement and ten new rules for the 21st century.
The IOM (2001) new rules lay out the following specific steps for redesigning patient- and family-centered healthcare:
In order to achieve these goals—to forge a partnership with patients and families to share decision making, to put patients in control, to share openly and honestly with each other, and to understand patients’ needs—a team must exercise commitment and rigor. This means challenging the status quo. It requires new habits of mind and perspectives and a more inclusive and reflective attitude; most of all, it requires leadership.
In 2006, The Institute for Family-Centered Care, in collaboration with the Institute for Healthcare Improvement, convened a meeting with 26 patient and family advisors and 59 administrative and clinical leaders from hospitals and other healthcare organizations. Leaders from three foundations also attended. The goal was to explore how to enhance efforts to collaborate with patients and families in the redesign of healthcare and recognize the immense potential of patient and family partnerships.
They determined that patient- and family-centered care redefines relationships in healthcare. It places emphasis on collaborating with patients of all ages, at all levels of care, as well as in all healthcare settings. It acknowledges that families, however they are defined, are critical to a patient's health and well-being and are key allies for quality and safety within the healthcare system. Those who are at the extreme ends of the age spectrum and those with chronic conditions are the most reliant on families.
Patients and families have experience, expertise, insights, and perspectives that are essential to transforming healthcare and enhancing quality and safety. A variety of key roles for patients and families to partner in quality improvement and in the redesign of healthcare should be available in hospitals, ambulatory practices, community-based organizations, agencies, and educational programs to prepare the next generation of healthcare professionals and administrative leaders. Payers, accrediting bodies, and foundations also need to follow suit.
Strategies to urge, develop, and sustain these partnerships are essential if we are to change and improve healthcare outcomes, lower costs, and provide genuine patient- and family-centered care. The resulting experiences will inspire patients to say, “They give me exactly the care I want and need, exactly where and how I want and need it” (Berwick, 2009).
Patient and family advisors guided the development of the Neuroscience Center for Excellence. The following represents three years of quality improvement data:
- Patient satisfaction up from 10th to 95th percentile
- Length of stay decreased 50% in neurosurgery
- Reduction in medical error by 62%
- Staff vacancy rate reduced from 7.5% to 0%
- Improved staff and provider perception of the unit
The following lessons will focus on developing partnerships with patients at the patient, provider, and community levels to redesign healthcare for improved outcomes.