Patient and family advisory councils transform the health care experience

LEXINGTON, Ky. (Aug. 8, 2024) — Claire and Daniel Polston had plenty of time to observe the daily operations of Kentucky Children’s Hospital’s neonatal intensive care unit (NICU).  

They had 400 days, to be exact. 

When their son Everett was born at 23 weeks, he required a prolonged hospital stay with intensive medical intervention. During those 400 days, the Polstons had the chance to get to know the NICU staff and learn about patient care protocols – and even come up with a suggestion or two on how to improve the patient and visitor experience. 

“His long stay gave us lots of thoughts on improvements that could be made to the already outstanding hospital setting he was in,” said Claire. “We also wanted to find a way to give back to the place that gave us so much, allowing both of our sons to survive and now thrive.  We felt that if our experience could provide insight to the parent perspective and potentially shape something that could help other parents or babies in the future.” 

The Polstons were asked to join the NICU Parent and Family Advisory Council, one of seven councils across the UK HealthCare enterprise dedicated to garnering and implementing feedback from patients, their families and even UK HealthCare staff. The partnership between the councils and UK HealthCare is vital for improving quality, safety and service and patient experience. 

“At UK HealthCare, we firmly believe that listening to feedback from patients and their care partners or family members is crucial for improving all aspects of care,” said Angela Clemens, the patient, parent and family advisor manager in the Office of Patient Experience. “Our patients and their families are at the heart of everything we do, and their insights provide invaluable perspectives that help us identify areas for enhancement. By implementing their suggestions, we not only improve the patient experience but also build a culture of trust and continuous improvement within our hospitals and clinics.” 

The Polstons got a chance to see the council’s work firsthand when their second son, Nolan, also had a long NICU stay. Teh council designed a NICU-specific guidebook for parents to help families navigate the often terrifying and overwhelming experience of caring for a baby born premature or with complex medical needs. Even though they learned everything they needed to know during Everett’s stay, Claire said that looking at the guidebook as a NICU parent, she and Daniel could appreciate how valuable an asset it could be to new and new-to-NICU parents.  

Now that the boys are older, Claire and Daniel serve on the KCH Parent and Family Advisory Council. Claire also serves as a parent advisor on the KCH Quality and Safety Committee, a group of pediatric clinicians, staff, administrators and family representatives dedicated to identifying areas where the quality of care can be improved.  

Recently, the council addressed how providers and researchers can approach parents about participating in research. While acknowledging that medical research is critical in constant improvements to medical practices, asking parents to participate is a delicate conversation to have when they have a child in the hospital. The council offered suggestions as to how to approach these conversations in a way that benefits the research team but also does not contribute to the family’s stress during a hospital stay. 

A patient with a unique perspective 

Tiffany Arps is an advisory council triple threat. First, she joined the Cystic Fibrosis Patient and Family Advisory Council in 2020, advocating for her fellow patients with cystic fibrosis (CF). CF, a condition that causes the body to produce thick, sticky mucus that clogs organs and airways, impacts every aspect of a patient’s daily life. Tiffany wanted to be involved with creating ways for patients to work with their providers and be proactive members of their own care team. 

“I really wanted a space to collaborate and advocate for the care of CF patients at UK HealthCare,” she said. “Those of us with CF cannot be in person with other individuals with CF due to the risk of cross infection, so being able to connect via telehealth with other CF patients to collaborate and improve care was exciting. CF is a complicated genetic condition and outside of general CF clinic appointments, many of us see multiple additional specialists due to other issues that arise from CF. There is an overall lack of knowledge across health care about the needs for those with CF and complications that may arise.” 

Not only is Tiffany a patient, she works at UK HealthCare as a licensed clinical social worker in the Department of Psychiatry’s SMART Clinic. She has an intimate knowledge of UK HealthCare treatment protocol and can identify ways providers can better serve their patients.  

“We utilize our own experiences, as well as think outside of the box to identify other potential barriers that may exist within the population due to social determinants of health, to advocate for change,” she said. “I am a licensed clinical social worker, so advocating is part of my day-to-day life and a major value for me. I thought this would be a great way to advocate for myself and others like me and be a part of improving health outcomes overall.” 

The CF council was instrumental in creating a pre-clinic survey used to direct care for each visit and ensure that concerns are addressed, developing resources to streamline the admission, inpatient and discharge process, creation of a CF quarterly newsletter that is available in all exam rooms, identifying barriers to care, including mental health care and improving cleanliness and infection prevention protocols during inpatient stays. 

Tiffany is also a member LGBTQIA+ community and serves as the co-facilitator for the LGBTQIA+ Patient and Family Advisory Council. Drawing from her experience both as a patient with complex medical needs and an employee of the enterprise, Tiffany has a unique perspective in how to better care for patients in marginalized and underrepresented populations. 

“LGBTQIA+ individuals are more likely to experience health inequities and discrimination in health care systems, therefore experiencing worse health outcomes,” she said. “Individuals who are both members of the LGBTQIA+ population and of a racial or ethnic minority, face even higher levels of health disparities. Structural stigma and social stressors are a major obstacle for LGBTQIA+ individuals attempting to access health care. This advisory council is vital in improving health care access and overall health outcomes for this population, and I am so excited to be a part of it.” 

The patient and family seal of approval