Spotlight: Engaging Patients and Their Families in Family-Centered Care

Health Services Research | Elizabeth Cox

Elizabeth Cox, MD, PhD
Elizabeth Cox

Goal: To engage the voices of children and families to deliver safer, higher quality pediatric care.

ICTR Support: In addition to receiving ICTR Pilot Awards in 2008 and 2013 to support her research, Dr. Cox’s work was strengthened through a variety of collaborations with program partners within the ICTR Community Academic Partnerships core, assistance from biostatisticians, the Office of Clinical Trials, and scientific editing. Cox also received competitive ICTR-CAP supplemental funding to create state-of-the-art resources to support researchers wishing to conduct patient and other stakeholder engaged research.

Outcomes: Cox’s 2008 Pilot Award, Patient-Centered Care for Children with Chronic Disease, led to an AHRQ R18 which generated evidence to support adoption of the family-centered rounds approach to care in hospital settings. UW Health has incorporated this approach within the pediatrics service. The resultant Family-Centered Rounds (FCR) Toolkit has been widely disseminated and accessed by users in 44 states, Washington DC, and 11 countries.

Her 2013 ICTR Patient Centered Outcomes Research (PCOR) Pilot Award, Engaging Stakeholders to Deliver Family-Centered Diabetes Self-Management Resources, and a PCORI-funded study have engaged children with type 1 diabetes and their parents to tailor diabetes self-management resources to the unique needs of each child and family. In addition, the Children’s Hospital of Wisconsin explored the development of group-based chronic disease management visits that would utilize Cox’s scheduling models, needs assessment tools, and content.

With support from the 2013 PCOR award and other ICTR resources, Cox has co-authored three toolkits to support patient and other stakeholder engagement including the Toolkit on Patient Partner Engagement in Research (TOPPER), Hard-to-Reach Patient Stakeholders (HARPS): An Engagement Guide, and Sustaining Engagement of Blended Stakeholder Boards Across the Research Trajectory. Collectively, these toolkits have been accessed by over 200 individuals world-wide.

Cox has become a leader in patient-centered outcomes research, and has been instrumental in developing local and national resources to support investigators wishing to conduct high-quality patient and other stakeholder engaged research.

Cox ED, et al. A Family-Centered Rounds Checklist, Family Engagement, and Patient Safety: A Randomized Trial. Pediatrics. 2017. Apr 25. 139(5): e20161688. doi: 10.1542/peds.2016-1688.

More: Does a Personalized Approach Help Young People Manage Type 1 Diabetes?