Built to Connect

Nemours’ experience-focused culture recognizes that “everything we are and do, with and for children and families throughout the care continuum” shapes the patient experience.

The shift to an experience-focused culture at Nemours began by broadening the narrower construct of service excellence to reflect the importance of all facets of a patient and family experience. This comprehensive view includes how, when and where services are delivered, and the safety and quality of those experiences. It also recognizes the relationship those factors play in health outcomes.

Reinforcing Patient Experience

In addition to broadening the concept of patient experience, in 2019, the revamped Nemours Patient Experience Department emphasized the importance of patient and family perspectives by:

  • encouraging ownership and involvement across all levels of the enterprise;
  • strengthening and expanding the family advisory committees, including engaging more families in virtual committees;
  • facilitating associate-led improvement projects designed to enhance the patient experience; and
  • reinforcing Nemours’ unique identity as a patient experience-focused culture.

The department’s innovative approaches to the measurement and improvement of patient experience has culminated in more than 100 improvement projects across the health system to be implemented in 2020. These include COVID-19 related projects that will enhance the safety and quality of care as well as provide virtual care through pioneering techniques.

Empowering Patients Before, During and After Their Experience

The award-winning “Path to Home” program at Nemours Children’s Hospital is a patient flow process that prepares families for discharge the moment their hospital admission begins. “Path to Home” is based on process improvements such as modifying questions to better identify a patient’s barriers to discharge; integrating those responses into the EHR; and implementing daily rounding with the entire interdisciplinary team so discharge planning stays top-of-mind. Other Nemours programs focus on preparing adolescents to assume primary responsibility for their health care.

Navigating the Health Care System is a four-unit health literacy curriculum that Nemours designed for high school students in classroom and community settings. Students learn things like how to understand an insurance card and where and when to seek appropriate levels of care. Launched in Delaware, the curriculum has been embraced nationally, with 446 registered users across 52 U.S. states and territories. The series has been recreated for adults and used in community colleges and is currently being modified for use with elementary school students.

Nemours has developed a myriad of ways to prepare children and families for managing their health.

Beyond education, Nemours is working in collaboration with adult health providers like Christiana Center for Special Healthcare Needs. Together, clinicians from Nemours and Christiana work with young adults and their families to co-manage care. Working as a team ensures an informed transition and tapers from pediatric care to adult care connecting young adults to the next stage in their lives and supporting optimal health.

Nemours was one of the first in the nation to launch a comprehensive transition of care program covering chronic and complex conditions involving the full range of medical specialties.

Support From Every Angle

For parents and children facing a diagnosis of pediatric cancer, the Nemours Center for Cancer & Blood Disorders (NCCBD) offers a multi-site, multidisciplinary collection of experts and partners all within one health system. In addition to services supporting mind, body and spirit, the NCCBD works toward finding a cure.

NCCBD ranks third in the U.S. in total clinical trial enrollment making it one of the largest contributors to National Cancer Institute (NCI) funded pediatric cancer research in the country. In 2019, NCCBD received a six-year $4.7 million renewal award from the NCI to continue the work of the Community Oncology Research Program (NCORP). This makes Nemours one of only three fully integrated pediatric cancer networks recognized by NCORP for excellence in clinical research, clinical care and quality improvement. Through NCORP, Nemours brings the most innovative therapies to children in their community-based settings.

In a sense, when a patient comes to Nemours, they are not seeing one person, they’re seeing 20 people because we truly work together.
– Howard Katzenstein, MD, Co-Director, NCCBD

NCCBD hematology/oncology physicians and research scientists collaborate closely across the Nemours enterprise. Additional efforts to further integrate this complex specialty across Nemours began in 2019. By bringing teams together and looking at evidence-based care, the NCCBD nurses are focused on clinical standard work — aligned with clinicians — so that care across the enterprise seamlessly meets the same goals. Translating best practices and looking at the model of care at infusion centers, they are developing practice guidelines focused on patient-centered experiences such as chemotherapy safety teams.

Donors and community partners also make critical contributions to round out the patient experience. The “Home Team” at Jacksonville’s NCCBD site has formed a safety net to ensure families have access to everything necessary to successfully navigate their journey. Collectively, this group provides access to hospital services, art and music therapies, a full-time Child Life specialist, psychosocial support, family activities and help with basic living expenses.

Music therapy proved to be a powerful and positive outlet for Mateo as he battled to overcome leukemia.

Finding the Best Ways to Help Families Receive the Care They Need

Nemours Center for Healthcare Delivery Science (CHDS) is an enterprise-wide research center that studies the many influences that affect outcomes, quality, cost, safety and value of care. CHDS builds scientific evidence to connect the best methods for delivering care to children and families.

CHDS is currently conducting more than two dozen studies, including an innovative eHealth intervention for parents of children with cancer. This work, supported by a NIH R03 award from the NCI, is based on earlier in-person versions of the Surviving Cancer Competently Intervention Program, designed to reduce cancer-related anxiety and improve the coping abilities of a patient and family dealing with cancer.

Data from the R03 study will be used to power a randomized clinical trial to establish clinical efficacy of the intervention.

You can have the best treatment in the world — the drug that reverses some major health condition or a technology that could transform health. However, if we don’t think about the potential barriers to access, understanding or use of those modalities, we won’t be able to fully realize advances in science.
– Anne E. Kazak, PhD, Director, Nemours Center for Healthcare Delivery Science

NEMOURS APP: DIGITAL HEALTH MANAGEMENT

The Nemours App provides an integrated, personalized point of access to help families manage their child’s health and keep clinicians in the loop between appointments. In addition to convenience, the app’s functionality increases the value of the time clinicians and families spend face-to-face and keeps conditions better managed outside the doctor’s visit. Features include the ability to:

  • complete forms and make appointments
  • view patient records and request Rx refills
  • access condition-specific instructions, articles and videos
  • conduct on-demand telehealth visits
  • track early literacy gains, presurgical procedures and special medical care