We have watched our sister, Chrissie Blackburn, become an amazing mother, patient advocate and inspiration to many. Since the birth of her daughter in 2007, Chrissie has been relentless as an involved parent, advocating for her daughter who requires the care of many specialists. Chrissie recognized that many other parents did not know how to advocate for their child, know what to ask, or even that they should ask to be more involved in their child’s care. She made it her mission to help other parents become informed, involved and activated in their children’s care.
When Chrissie moved back home to Cleveland with her former Marine husband, Charles, and daughter, Lily, they became parents at Rainbow Babies and Children Hospital where Lily received both routine and special care. Chrissie made it her business to get to know all of Lily’s physicians and nurses , and then sought out how she could help other parents. In 2011, she began serving as a parent volunteer on Rainbow Babies and Children’s Hospital Patient and Family Advisory Council (PFAC). Her commitment and leadership were soon recognized by hospital staff and other parents on the PFAC, as she was elected vice president in 2012 and president in 2013. As noted in results below, through communication, collaboration and inspiration, she transformed this council with necessary changes. During this same time period, Chrissie became involved in the National Partnership for Patients campaign, connecting the Weber Shandwick staff who oversee the National Patient and Family Engagement network. She became an active member of this network, frequently participating on national webinars and invited to present at several face-to-face meeting in Washington D.C. Again, her communication style, openness to collaboration and commitment to transformation was recognized by many, leading her to invitation to participate on several other local, state and national initiatives. These additional activities include:
- Serves on the advisory board for Children’s Hospital Association’s Speak Now for Kids campaign which speaks directly to Congress about children with medically complex conditions receiving Medicaid support.
- Serves on the Ohio Patient Safety Institute Board to bring Patient and Family Engagement to the table in the state of Ohio.
- Serves on Ohio KePRO’s Learning and Action Network for Hospital Acquired Conditions as a patient voice.
- Selected as a Patient and Family Council leader for the Institute of Medicine’s mission for a virtual Patient and Family Advisory Council aimed to share best practices.
Still throughout this period (2012-current), Chrissie continued to serve as a volunteer and president of Rainbow’s PFAC. She began to expand her connections, proactively seeking audience with leaders of University Hospital Case Medical Center. She worked extensively with executive leadership to define a position dedicated to patient and family engagement. An enlightened leadership team (already strong proponents of patient-centered care and patient and family engagement), approved the innovative position, supporting their commitment to continue transforming the health system toward greater patient and family engagement. In January 2014, Chrissie became the health system’s very first principal advisor of patient and family engagement, assuming this position.
While serving as a volunteer in 2012 and 2013 Chrissie also came to appreciate even more so that many parents did not know how to be involved in their children’s care, nor did healthcare professionals necessarily know how to encourage involvement of parents. To address this gap, Chrissie developed and defined the ETeam®, a framework designed to engage and empower patients and families in their care:
- Engage and Empower me
- Take your time with me
- Explain things in terms I understand
- Appreciate my situation
- Meet my needs
Chrissie shared her idea with hospital staff and has since collaborated to develop a full curriculum and peripheral materials to make the ETeam an actionable framework.
During the past two years her volunteerism, innovation, communication and collaboration with many have transformed the health system she is a part of and have inspired many. All who meet Chrissie and hear her speak witness her passion and commitment to bringing patients and families into care at the bedside as well as into health care organizations’ activities.
Results of her several commitments include:
- Restructured and re-energized the 23-year-old PFAC at Rainbow Babies and Children’s Hospital, including new officer roles, more hospital involvement, new bylaws and active recruitment of new parents to expand the diversity of the council.
- Created a position that oversees PFE within a complex academic medical center, and is already strategically putting plans in place to assess and measure PFE activities within the organization.
- Serves as University Hospitals Case Medical Center’s first “Principal Advisory for Patient and Family Engagement”, reporting to the health system’s chief nursing/patient experience officer with matrixed reporting to the health system’s chief quality officer.
- Co-authored paper about PFE (NAQ, July-Sept 2013).
- Launched ETeam pilot on four patient care units at UH Case Medical Center, already demonstrating preliminary positive results related to patient experience.
- Piloted patient role on National Coordinating Council of Medication Error Reporting and Prevention (under USP oversight).
- Continues support and involvement in the national Campaign to increase hospitals’ involvement of patients and families in care and quality/safety activities.
Chrissie has become a recognized PFE leader at her own health care system, statewide and nationally. We have watched and listened from Colorado-inspired by our little sister’s gumption and passion, and so proud of all that she has taken on, as she continues to care for her daughter and help other patients, parents and family members become active participants in health care.