Partnering with Patients and Families from the Bedside to the Boardroom

September/October 2013
Patient- and Family-Centered Care

Partnering with Patients and Families from the Bedside to the Boardroom

Imagine a setting where patients and families feel confident and comfortable asking questions, providing valuable historical information, and discussing their health priorities in open dialogue with their providers. How many adverse medical events could be avoided? How many duplicated tests could be eliminated?
Engaging patients and families in the delivery of healthcare is increasingly recognized as both the right thing to do and a critical strategy for improving patient outcomes, safety, and quality of care and lowering costs. Indeed, patients and families are the most underutilized resources in healthcare.

Patient- and family-centered care (PFCC) empowers patients and family members to provide their perspective of the care continuum. Central to the practice is its focus on care that is respectful, shares information, welcomes participation and collaboration, and responds to patient preferences. The purpose is to ensure the patients’ values guide all clinical decisions.

There is little question that engaging patients and families in healthcare makes sense. The more difficult question is, “How do we create a healthcare culture and environment that invites patients and families into meaningful and valuable partnerships with providers and administrators?” By looking at the following six elements of patient- and family-centered practice, we can identify opportunities for integrating patients and families into all elements of healthcare and find ways to build structures that support their active involvement from the bedside to the boardroom.

Leadership buy-in. As a starting point, hospitals must assess the culture of their organization. If PFCC is not integrated into an organization’s culture, authentic partnerships between patients, families, and providers will not be realized or sustained. Leadership must buy into the concept of partnering with patients and families at both the clinical and organizational level. If culture change is necessary, leadership must intentionally drive that shift by integrating the patient and family voice into all quality improvement efforts, leadership committees, and newly designed programs. This inclusion recognizes and acknowledges that the patient and family are the only stakeholders in the healthcare environment who cross all organizational silos and therefore provide a valuable and unique perspective. It is also important for leadership to understand that PFCC is not a new concept or initiative aimed at solely improving patient satisfaction scores; it is a new way to do the work already being done. The patient voice should be evident in every interaction in the organization.

PFCC-practice lead team.
Healthcare organizations often embrace the concept of patient- and family-centered care without thoughtfully creating a structure to train, support and replicate patient- and family-centered activities across the organization. Developing a lead team responsible for ensuring that these activities take place is critical. This team should consist of champions who have the traction to spread patient- and family-centered activities across the organization and those who have a natural aptitude for partnering with patients and families. It is important that it is an interdisciplinary team that includes members of executive leadership. An accurate assessment of the current state of patient- and family-centered practice is an excellent starting point for the lead team. The assessment should identify structures ripe for alignment with PFCC practices and leverage established resources and structures rather than create new ones. For instance, there may be an existing interdisciplinary team that could assimilate leadership of PFCC into the charter.

Patient and family engagement. How to successfully engage patients seems to be the million dollar question for hospitals. Patient and family engagement can be implemented in various ways at the organizational level. For example, engagement may entail developing a patient and family advisory council, launching an electronic network of advisers or integrating patient and family advisers into existing hospital committees or Lean improvement teams. Whatever form engagement takes, the key to creating lasting impact is preparation. Leaders need to prepare the organization for the inclusion of the patient/family voice, which requires developing a long-term shared vision for engaging patients and families.

Preparing patient and family advisers is equally as important. Proper training should provide individuals with a context for the role. Core training components include an understanding of the language of partnership and guidance on how to share patient experiences with the goal of education. Likewise, a patient and family advisory council is most powerful and effective in its ability to represent the population served at the healthcare organization. Councils should therefore represent the ethnic, socio-economic, and diagnostic diversity of the population served in order to have widespread impact.

Impact on practice. How to establish partnering relationships with patients and families is not something taught in medical school. To expect clinical staff to be skilled in implementing partnering strategies is unrealistic unless continuous training and education are provided. It is important to leverage existing avenues for staff development to present patient- and family-centered practice curriculum to clinical and nonclinical staff members. Family faculty programs can be particularly effective in delivering PFCC curriculum. As a result of adopting PFCC, providers can improve communication with patients, and the efficiency and effectiveness of their practice.

Organizational improvement methods. To achieve true integration of PFCC into healthcare requires a sustained focus on continuous improvement. It also requires a willingness to constantly seek and capitalize on opportunities to mobilize partnerships with patients and families. Integrating patient and family advisers into processes for improvement ensures that programs, policies and evaluations reflect the needs and experiences of patients in addition to meeting regulatory requirements and providing clinical staff the means to provide safe, quality, and effective care.

Environment. The impact of PFCC on the healthcare environment is often overlooked. It is important to assess the indirect influence the physical environment has on establishing partnering relationships. Patients and families are instrumental in providing an accurate and valuable environmental assessment. By simply walking and talking with them, organizations can uncover some of the indirect messages they receive in the healthcare environment. Although organizations may not currently have the resources for major environmental improvements, most often patients and families will help identify a number of small changes that can support a culture of partnership.

Patient- and family-centered care practice is a journey, not a destination. For healthcare organizations, this journey involves tapping into the most underutilized resources in the healthcare environment—the patient and the patient’s family—and partnering with these resources to improve quality and safety as well as the overall patient experience. Wherever an organization is on this journey, it is critical to continue to advance PFCC efforts in every aspect of healthcare, from the bedside to the boardroom.

Libby Hoy is founder and CEO of Patient and Family Centered Care Partners. She has navigated the healthcare system from the perspective of patients and their families for the last 15 years. In her role as the family advocate at Miller Children’s Hospital in Long Beach, California, she worked to initiate, educate, and provide the family voice in the establishment of the Patient & Family Centered Care Program. In addition, Hoy has presented to hundreds of medical professionals and written several articles on partnering with healthcare providers. She may be contacted at

Mia Arias is director of programs for the National Health Foundation, and part of 2013 PFCC Conference Planning Team. At NHF, she is she is responsible for the management of a hospital collaborative focused on patient safety, developing patient and family centered care projects and overseeing a training program for certified application assisters and healthcare advocates. Arias has several years of experience working with non-profit community based healthcare organizations. Previously, she served as the Simms/Mann Health and Wellness Project Coordinator at Venice Family Clinic. Prior to this, she worked in development at The Children’s Clinic, a community clinic in Long Beach, California. She may be contacted at