Patients and their families are truly at the heart of quality health care, and all that we do at TIPQC. However for most hospitals, parents remain our greatest untapped resource as quality and safety partners. When surveyed, 95% of our NICUs said that their hospitals encouraged patient & family centered care, however less than 30% of the hospitals involved families as advisors and less than 20% involved families on quality improvement teams. How do we move patients and families from being customers to our powerful new partners, engaged in the dance of providing quality health care?

It might be helpful first to understand what patient & family-centered care means. Patient and family centered care is defined by the Institute for Family Centered Care as, “an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families.” Patient and Family Centered Care involves four aspects: dignity and respect, meaningful information sharing, participation, and collaboration.

There is great evidence that patient & family centered care is a “best practice” ensuring a culture of accountability and transparency with an increasing demand for greater communication and disclosure as healthcare organizations and individuals advance their performance. In a project in North Carolina NICUs called “How’s Your Baby,” the state collaborative found: shorter lengths of stay, higher satisfaction with care, fewer re-admissions, improved rates of breastfeeding, reduced parental stress, improved parental comfort, and greater competence with post-discharge care. Other similar NICU studies have shown improved weight gain for preemies, lower need for breathing and feeding tubes, and result in early discharge, fewer re-hospitalizations, and better staff satisfaction. Other hospitals have found additional benefits including: higher patient satisfaction, lower lengths of stay, lower medical errors, higher discharge volume, lower staff vacancy, higher perception of the unit, greater framework and strategies to achieve quality and safety goals, enhanced market share, lower costs, and strengthened staff satisfaction.

According to the Institute for Family Centered Care, involving patients and families as partners & advisors will: bring important perspectives about the experience of care, teach how systems really work, inspire and energize staff, keep staff grounded in reality, provide timely feedback and ideas, lessen the burden on staff to fix the problems (not required to have all the answers), bring connections with the community, and offer an opportunity for patients & families to “give back.”

There are many perceived barriers to involving families from the healthcare side including, transparency, perceived risk, parent’s unreasonable expectations, staff concerns, and HIPAA limitations. All of these are indeed concerns and may need to be met with creative solutions to reap the benefit of collaboration.

According to the Institute for Healthcare Improvement, “We have observed that in a growing number of instances where truly stunning levels of improvement have been achieved, organizations have asked patients and their families to be directly involved in the process. And those organizations’ leaders often site this change—putting patients in a position of real power and influence, using their wisdom and experience to redesign and improve care systems—as being the single most powerful transformational change in their history. Clearly this is a leverage point where a small change can make a huge difference.” Reinertsen JL, Bisognano M, Pugh MD. Seven Leadership Leverage Points for Organization-Level Improvement in Health Care (Second Edition). IHI Innovation Series white paper. Cambridge, MA: Institute for Healthcare Improvement; 2008. (Available on IHI.org)

In order to successfully implement patients and families as partners, a culture shift may be necessary, family selection and training will be required, and a belief that family participation will be essential. In order for TIPQC to have a strong patient and family centered focus, all of our hospitals and practices will need to embrace family centered care. (For more on being a patient friendly hospital, please see the complete Hospital Self-Assessment Inventory)

As we look closer at our involvement of families and patients as “partners,” we will see an exciting engagement and collaborative exchange which will be well worth the hard work of forging new ground for some, and a distinct culture shift for others.

Shall we join together in this journey?

Resources

• Patients As Partners: Toolkit for Implementing the National Patient Safety Goal, Joint Commission
• Strategies for Leadership: Patient & Family Centered Care, Joint Commission Resources, Advisory Board Company, Presented by the American Hospital Association in partnership with the Institute for Family-Centered Care
• Creating Patient and Family Advisory Councils
• Institute for Family Centered Care
• Center for Medical Home Improvement

Written by Brenda Barker