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On the Road with Lurie Children's Hospital
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The Power of All: Engaging Individual and Collective Focus to Improve Care Experiences

On the Road with Ann & Robert H. Lurie Children's Hospital of Chicago

Natalie McKay and Stacy Palmer, CPXP

February 2018

Our latest On the Road took us to the warmth and comfort of Ann & Robert H. Lurie Children’s Hospital of Chicago on an otherwise cold and stormy winter day. Located in the heart of downtown Chicago, Lurie Children’s mission is to enhance the health and well-being of children through patient care, research, education and advocacy.

Lurie Children’s is the pediatric teaching facility of Northwestern University Feinberg School of Medicine. Its commitment to deliver the best in patient and family care focuses on pediatric healthcare delivery, research into the prevention, causes and treatment of diseases, education for physicians, nurses and allied health professionals and advocacy for the general well-being of all children. That commitment, highlighted by a desire to keep kids and their families at the center of all they do, was apparent throughout our visit.

Our gracious host was Barbara Burke, Senior Director, Patient and Family Experience and Engagement at Lurie Children’s, as well as co-leader of The Beryl Institute’s Pediatric Community. Burke has been with Lurie’s for over 18 years in a variety of roles and currently reports to the Associate Chief Medical Officer over the Center for Excellence who oversees experience engagement, patient safety, clinical quality and performance improvement. “I believe our structure reinforces Lurie’s commitment to experience,” said Burke, explaining the evolution of Lurie’s experience efforts from an initial service excellence. “It is now truly embedded within all layers and areas of the hospital.”

The Power of All

Reflecting Lurie’s integrated view of experience, Burke partners with Human Resources on employee engagement efforts centered around the organization’s Power of All culture. “Each of us has power individually, but also collectively,” Burke shared acknowledging employee engagement, joy of work and burnout are significant issues. “Partnering with Human Resources ensures that the needs of our staff are prioritized so they have the support and resources they need to best care for our patients and families.”

The Power of All culture has become a significant influence at Lurie’s even resulting in an evolution of their former tagline ‘It starts with You’ to ‘All, for your One’ which Burke proudly shares has become much more than a marketing campaign for the organization. As reflected on their website, “The words perfectly articulate the promise we make to every family, every day. It’s not just a tagline — it’s our rallying cry.” And it appears to be a rallying cry that resonates with staff, reinforcing why they do the work they do and how important their contributions are to patients and their families.

“We strive to provide best in class service and building rewarding and meaningful connections for staff is an important part of that,” said Burke. “It’s the idea of ‘N of one’ and a reminder to treat everyone with compassion and respect.”

Burke also co-leads the organization’s Staff Safety Committee with her colleague Ken Gray. The goals of the committee are to increase staff awareness of safety through communication and education, eliminate preventable harm, and develop resources to mitigate staff safety risks all while promoting a culture of safety.

“We do things to ensure patients and families are well cared for and healthy,” said Burke. “But it is an unsafe practice in healthcare to believe the customer is always right. We must manage expectations with our families to ensure both patients and staff are safe and that respect is mutual.”

Lurie's promise to employees is striving to provide an inspiring, fulfilling work experience by working toward open, transparent feedback, active listening, meaningful learning experiences and professional development in a safe and inclusive workplace with rewards and recognition for great work.

They also are working toward a culture of transparency through unit-based dashboards and posting safety rates for staff and patients/families to see. This not only represents a sense of accountability and ownership to their patients/families, but a recognition of their ongoing efforts towards improved safety.  

Vision 2025

Lurie Children’s leaders are ensuring the focus on employee engagement, patient/family experience and safety live on as well, as reflected in their 2025 Vision aimed at Achieving a Healthier Future for Every Child. The imperatives for the vision include advancing Lurie’s stand as a leading center of scientific discovery and innovation and expanding clinical capabilities to benefit more children. One of five key goals in the vision is to be the employer of choice, with strategies ranging from developing an engaged workforce to fostering environments of joy and promoting employee health and wellness.

Another goal of providing the best care and experience focuses on advancing evidence-based, family-centered care practices, relentlessly pursuing zero harm and high reliability and achieving best in class patient and family experience.

Innovation

As you might expect from an organization so focused on and acclaimed for research, innovation is an unwavering commitment for Lurie’s. “We are always trying to elevate so we’re ready for what’s coming next,” said Burke.

One example is found in Lurie’s investment in telehealth community partnerships to expand the organization’s reach and leverage its expertise and brand to serve more patients and families. Led by Dana Schinasi, MD and Katie Bohling, partner hospitals can access Lurie’s physicians for consultations, second opinions and other services. While the technology enables theses interactions Burke acknowledges that training for physicians is equally important as physicians must learn how to interact with kids and families virtually while still conveying compassion and personalization.

Telehealth is also being used to enable families to be present during rounds. Burke shared that approximately 50% of families are typically unable to be at their loved ones’ bedside for rounds due to other obligations, yet thru technology they are able to patch in families to be present for these important interactions. “We want to connect families with their providers and have confidence they have the information they need to best care for their loved ones,” said Burke.

Engaging Kids and Families

A key ingredient to delivering best in class patient and family experience is involving recipients of care in defining and developing overall experience strategy and all elements that support it. To that end, Lurie Children’s is committed to partnering with kids and families to better all aspects of the hospital experience. Lurie’s Kids and Family Advisory Boards represent a diverse group of patients/family members who meet 10 times each per year plus one annual joint meeting.

 

With members ages 11 to 17, the Kids Advisory Board shares what is important to children, teens and siblings during healthcare experiences. Their mission is to recommend change that positively affects patient care here. This is accomplished by providing the hospital with feedback, suggestions and ideas about topics that are relevant to the hospital and patient care from the child’s perspective.

Partnership with families is also pivotal to the care provided at Lurie Children’s. The Family Advisory Board was founded in 1992 to formalize the partnership between parents and hospital leadership, and to seek parents' consultation on an ongoing basis.  Made up of parents of medically complex children who have had extensive inpatient and outpatient experiences at the hospital, the Family Advisory Board advises administration and medical leadership on patient needs and hospital. Family Advisory Board members participate in hospital planning, operating and policy committees, orient new nursing staff about family-centered care, collaborate on letter writing campaigns and lobbying efforts on behalf of the hospital and speak and give testimonials at press conferences, educational sessions and other hospital events.

Burke shared several examples of how the Kids and Family Advisory Boards have influenced decisions at Lurie Children’s, one being the design of the hospital’s Chapel. The planning team enlisted a well-known and respected stained-glass company to design traditional Chapel windows. However, when they showed the designs to the Kids and Family Advisory Boards, the feedback was surprising. While the members acknowledged the beauty in the designs, they expressed a concern that they were reminiscent of death and sorrow. They strongly felt the art just wasn’t right for a Children’s Hospital. Listening to their feedback, the Lurie’s staff partnered with another designer to create art representative of life with bright colors and simple designs. “It was a water shed moment,” said Barbara. The chapel is now a beautiful, convertible space where people can go to pray and participate in other religious activities.

Burke shared a great example of Family Advisory Board contributions through a program the hospital refers to as ‘the binder project.’ Originating with oncology patients, the binder project consolidated and shared family-created forms, charts and documents in order to help others. With such things as medication and symptom tracking, it compiled tangible lists and information to support families/kids with new diagnosis and/or conditions. “The Binder project took a while to come to fruition, but its impact is significant,” said Burke. “We often see families walking the halls clinging on to their binders. It was an impactful way for families to share their needs and knowledge with one another.”

Gathering Feedback in Many Forms

In addition to formal meetings with the Kids and Family Advisory Board Members, feedback is also solicited through an on-line E-Advisors group.  Exclusively using e-mail, the E-Advisors group enables us greater engagement and flexibility for reaching families. “Examples have included obtaining input on family-friendly hours, billing and coping and comfort.”

While Lurie Children’s works with a national survey company to collect patient satisfaction data, they also understand the importance of engaging feedback in other ways such as through trends in patient relations data, rounding tools, focus groups and even shadowing families during visits.  “We have to be creative in finding out what matters most to our families,” said Burke. “And we’ve learned that equally important is how we share that feedback with our staff to drive improvements.”

That was a key lesson learned for Burke’s department when they rolled out feedback reports to physicians. The system pushed out reports on a Friday afternoon, leaving one particular physician stressed about a piece of somewhat negative data all weekend. Appreciating how seriously and personally physicians took the reports, Burke’s team decided to alter their approach. In addition to adjusting the timing of feedback reports, they worked to ensure all feedback was sent with recommendations for improvements. “We spent time identifying top performers and understanding what behaviors led to their success. From that we created tip sheets to accompany survey results,” she shared. “The process was extremely beneficial in order to learn from our providers what successes and challenges they experience. This has led to the identification of additional learning opportunities such as in-clinic observations, support for providers looking to better understand their data, and a newly developed provider committee that provides essential input into the shared family and provider experience.”

Designed for Comfort, Safety and Creativity

Lurie Children’s opened their current hospital in 2012 after very thoughtful planning and design. The hospital currently has all 288 private patient rooms and is in the process of transitioning an administrative floor to an expanded cardiac care unit that will increase the number of families they can service at any time. Centrally-located nurse stations are specifically located in the middle of patient floors so that all rooms have windows for patients and family members to enjoy. Each floor is decorated with a fun, kid-friendly animal theme to help with navigation and create a welcoming environment for kids and families.

Patient art lines the halls on many floors through Lurie’s partnership with Snow City Arts, an independent nonprofit organization that educates and inspires children in hospitals through the arts. The organization visits Lurie’s regularly to assist children’s developmental and educational needs through the arts with one-on-one instruction in visual arts, theater and media arts.

A highlight of the hospital lobby is the Crown Sky Garden which includes light, sound, water and wood elements all geared at reducing stress. Bamboo planters divide the space to allow for active use as well as a quiet respite. A translucent interactive light wall weaves throughout the garden at different heights and changes color and brightness as people approach it – a favorite feature of kids and families.

A design priority at Lurie’s is streamlining processes to make navigation easier for patients and family members while still maintaining the security in the processes that are necessary. Burke and her team are committed to creating warm welcomes at the concierge stations while also ensuring safety is a top priority. They are currently examining front end optimization opportunities through looking at all the ways families are involved and engaged with the hospital. “We want to understand how people access and engage with our organization whether through calling, scheduling, reminders, wayfinding, etc. and we are working continually to better coordinate their journey,” said Burke.

Supporting Kids and Families throughout the Patient Journey

We enjoyed learning about the many ways Lurie Children’s supports kids and families during their hospital stays as well as in the transition home and back into the community.

Family Life Center

During their hospital stay, kids and families are encouraged to take advantage of the Family Life Center, the main respite area for all inpatients and their families, providing a variety of helpful activities, work spaces and rest areas. Understanding that every family member is affected when a child is in the hospital, Lurie’s focuses on providing activities and purposeful spaces not only for our patients, but for their siblings, parents and relatives as well.  The Family Life Center provides an incredible space for patients and families to come together to get away from their hospital rooms. Offering such things as play areas, craft stations, a library, a teen room and a recording studio, the area serves as a great distraction for kids and families. Volunteers even come in periodically to offer hair and nail services and massages.

In addition, each floor in the hospital has a family great room, a large recreational community space where patients and their families can get away from the hospital room, yet stay relatively close. There is no single purpose for the family great rooms; they are simply there when families need them, for whatever they’re needed. Burke shared that she often sees families gathered there to enjoy a meal or enjoy time with visitors.

 Almost Home

Lurie’s partners with the Almost Home program to provide transitional care in a home-like setting to children with complicated health needs, training for their families and respite care.

Almost Home Kids provides support to the family for up to two weeks with high nurse-to-patient ratios focused on providing confidence and instructions to help ease the transition home. “It’s a wonderful transition from hospital to home. Families learn what to do once they return home and even build community with other families through the process,” said Burke excited to share that a new Almost Home Kids is scheduled to open in Peoria, IL September 2018.

ParentWISE

Lurie’s also participates in the ParentWISE® (Parent Wisdom In Shared Experience) program, connecting the parents of current patients with experienced and specially-trained parent volunteers who listen and offer support in multiple ways. ParentWISE empowers parents to partner effectively with their child’s care team and to advocate for their child’s care needs. The connections also serve to support families in managing the stresses of having a child who needs specialized care or treatment

PeerWISE

Similarly, patients often find comfort in talking with people who have been in their shoes. Lurie’s helps facilitate this through the PeerWISE program. Volunteers are former patients over 18 who can mentor teen patients, and sometimes even their parents, as they go through the treatment process.

 

PeerWISE volunteers talk with patients and families about what it’s like to go through treatment, and about daily life after treatment. These conversations help normalize what can be extraordinary care plans, encouraging patients to stick to their treatments and cope with the associated challenges. 

A Culture of Compassion

Lurie Children’s approach to care includes an interdisciplinary team of social workers, chaplains, child life specialists and creative arts therapists who follow inpatients from diagnosis through discharge. Social workers and chaplains are available 24 hours, seven days a week. Activity coordinators, interpreters, teachers and volunteers help patients and families with respite, distraction, and other needs related to their hospital stay. Together with the patient’s medical team, the family services team addresses the needs of the whole family for the best possible patient experience.

According to their 7 values, the following core principles guiding the organization include:

  • Compassionate Service - We give our all, through patient and family-centered care, and by seeing the potential in each other and in those we serve.
  • Excellence - We strive to be outstanding in everything we do, clinically, administratively and personally, and are resilient to the challenges in our way.
  • Respectful Collaboration - We leverage the unique perspectives of each colleague and patient family to achieve the best possible outcomes together.
  • Diversity and Inclusion - We strive for an environment that represents the diverse patients we serve and respect that our individual differences make us a stronger whole.
  • Integrity - We honor the trust placed in us by taking accountability for our actions, living up to our commitments and being open, honest and humble.
  • Discovery and Innovation - We are driven to create better treatments and more innovative processes through an evidence-based approach and critical thinking.
  • Stewardship - We are respectful of the resources entrusted to us, including reputation, time and talent, as well as financial and physical assets.

The Simple Things: Ensuring Sustainability of Patient Experience

Lurie Children’s integrated approach to patient experience provides a culture of care within the organization by being people-focused. This includes their staff, the patients and families they serve and the community partners beyond – a true testimony of how all roles matter in patient experience. The team at Lurie’s understands the most important thing is sustainability of experience efforts. “You cannot underestimate the importance of compassion,” shared Burke. “It’s simple things like letting patients get on the elevator first. There must be compassion in each interaction. Grand gestures are not usually necessary, but consistent, personal and thoughtful gestures are key.” 

In closing, we are inspired by Lurie’s commitment to a strong organizational foundation by having a culture built on recognizing the value and respect of its employees and listening to the voices and insights from its patients and families. Our visit was a true reminder that it may be the simple things that mean the most, such as acting on the feedback of its patients and families or providing an informational binder for families. Every interaction matters – whether big or small.

“It’s the little details that are vital. Little things make big things happen.” – John Wooden


Special thanks again to Barbara Burke and Lurie Children’s for hosting us and sharing their incredible journey towards patient experience excellence. To learn more about the efforts, please contact:

Barbara Burke, MA, LPC
Senior Director, Patient-Family Experience
Center for Excellence, Ann & Robert H. Lurie Children’s Hospital of Chicago

312.227.4319 | 
bburke@luriechildrens.org

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