For several decades, health care has been changing. Health care used to center on the needs of providers and systems. Now it is becoming more centered on patients and families. This box illustrates part of the difference.

The patient and family-centered approach began in maternity and pediatric care. It has spread throughout health care, including primary care in recent years. Health care providers recognize that patients and families hold a unique perspective. They can share their knowledge with providers to improve health care quality and safety.

In 2001, the Institute of Medicine published a highly influential report entitled Crossing the Quality Chasm: A New Health System for the 21st Century. This report looked at strategies to drastically improve the health care system. The report stated that collaboration with patients and families at all levels will be essential to address the challenges we face in health care.

In primary care practices, hospitals, and health care systems across the country and in many countries around the world, patients and families are being asked to serve not only as advisors but also as leaders in transforming health care.

As the following short examples show, patients and families can serve effectively in a variety of leadership roles.

Co-leaders and leaders of peer education and support programs.  When Mike Wade, a patient at Santa Clara Valley Medical Center (SCVMC), took the Options for Healthier Living Program in 2004, he got very excited about it. Led by lay people with chronic conditions, Healthier Living teaches patients and families how to care for themselves and work with healthcare providers. It is part of the Chronic Disease Self-Management Program developed at Stanford University.

Wade trained to be a Healthier Living leader, then to be a master trainer, who trains other leaders. Working with cardiologist, Pat Kearns, he recruited patient John Pozniak, then others. They started giving the program in the community and at the hospital. They recruited more patients to become leaders. Under patient leadership, Healthier Living has become a major part of SCVMC chronic care. Other hospitals, and the Santa Clara County health care system have adopted it with SCVMC help. Wade has also helped start Healthier Living programs in other California counties.

Teaching health care providers and health care professionals-in-training.  Parent to Parent of Vermont began in 1984 to offer peer-led support to Vermont families who had children with special health care needs. It has since become a national leader in family support.

Parent to Parent of Vermont has also earned a reputation for training and supporting families to serve in faculty roles in health care. Their parents have taught in many programs – Medical Student Leadership Groups for first-year medical students; Medical Education Project for third-year medical students; Families in Resident Student Teaching for pediatric residents; and Vermont Interdisciplinary Leadership of Health Professionals for health care providers. Julianne Nickerson, a parent of a child with a congenital heart condition serves as director of the family faculty programs. Learn more.

Paid positions in health care related institutions, agencies, and organizations. Based in New York, The United Hospital Fund has a rich history of providing services and improving health care in chronic conditions and geriatrics for well over 100 years. Their program, the Families and Healthcare Project is devoted to promoting partnerships among family caregivers and health care providers. The director for this project, Carol Levine, is a woman with experience as a family caregiver for her husband who suffered a traumatic brain injury in 1980.

Co-investigators on research projects. The MCG Health System in August, GA has been integrating patient- and family-centered care in their hospitals for over 15 years. They offer many advisory and leadership opportunities to patients and families. Several years ago, they began to expand their model beyond the hospitals and into their outpatient clinics.

Christine Abbott, a parent of a child with chronic health care needs, was active as a family advisor at MCG Children’s Hospital. After being diagnosed with multiple sclerosis herself, she offered to share her expertise and insights with MCG’s Neuroscience Center. In 2008, she was offered a full-time paid position on a research team at MCG that is studying the effectiveness of patient- and family-centered electronic health records for patients with hypertension. Read more about Christine.

Advisors and leaders for national health care organizations. The Cystic Fibrosis Foundation has experience in partnering with individuals with cystic fibrosis (CF) and their families to improve care in all of their care centers across the nation. Efforts include: 

• In 2003, an adult with CF and a parent of a child with CF were added to the Cystic Fibrosis Foundation’s Education Committee to identify and review CF-related patient and family resources in 2003. 
• Since 2004, an adult with CF has served as a member on the CF Foundation’s Quality Improvement Initiative Strategic Planning Advisory Committee. 
• An individual with CF and a parent representative co-chair a Foundation Task Force that promotes and prepares patients and families to get involved in quality improvement work at their local CF Care Centers. 

Joan Finnegan-Brooks, an adult living with CF, has been serving as an advocate for the CF Foundation since she was a child. Her efforts to improve care and enhance quality of life for people with CF are extraordinary and inspiring. Read more.