Integration of PFCC in an Outpatient Clinic: Supporting ......• Quarterly family-centered email newsletter • Focus group to address the specific needs as well as loss to follow-up

Integration of PFCC in an Outpatient Clinic: Supporting Families and Their Children

Who Are Deaf/Hard of Hearing

Jennifer Wilcox Angelique Boerst, M.A

Jaynee Handelsman, Ph.D.

EHDI Conference March 14, 2016

Disclosure

•  My name is Jen Wilcox •  My co-presenters are Angelique Boerst and

Jaynee Handelsman •  We all work in Pediatric Audiology in the Division of Pediatric Otolaryngology at the University of Michigan Health System •  We have no conflicts to report

Session Objectives

Following this session, participants will be able to:

•  Use PFCC core principles as a framework to identify strengths and areas of growth •  Identify avenues for financial support for PFCC activities •  Share ideas on implementation of PFCC in an outpatient clinic

Core Elements of Patient and Family Centered Care

•  Doing things with the patient and family rather than to and for them

•  Putting the humanity and empathy back into healthcare

•  Partnering patients and families with staff and faculty to improve and enhance the patient and family experience at the point-of-care

•  Evaluating whether the systems and processes implemented are actually producing the intended outcomes

PFCC Principles at the Point-of-Care

Dignity & Respect

Information Sharing & Communication

Presence & Participation

PFCC is working "with" patients and families, rather than doing "to/for" them. ”

Partnering PFCC and Audiology: Common Goals

•  A collaboration or partnership between families, educators, and professionals that will facilitate the best outcomes for patients

•  Enhancing the quality of care •  Identifying and addressing gaps in services •  Helping patients and families to become

“experts” in their own care through education and promoting self-advocacy

Session Challenge •  We know you value a patient and family centered care

focus for children with hearing loss •  Think about your current efforts to insure that the family

voice is integral to decisions being made for individual children

•  Perhaps there are other elements of your clinical decision making that could be enhanced by inclusion of the patient/parent voice

•  Family members could provide you with information that would more broadly inform decision making

History of Parent Support at UMHS •  Sound Support is an outreach program that began over a

decade ago and is funded through a Medicaid match •  Mission is to improve the quality and timeliness of care for

children who are deaf and hard of hearing, including diagnosis, treatment, and rehabilitation of hearing loss

•  Elements of the program have included: –  Fostering innovation while promoting quality care and expanding

access to care –  Improving efficiency and treatment provided to Medicaid

beneficiaries –  Educating providers about the State’s Medicaid program –  Having a direct impact on Medicaid beneficiaries

Minimizing Barriers to Timely Diagnosis and Intervention

•  Target audience includes –  Families –  Educational professionals –  Medical professionals –  State level policy makers

•  Multifaceted approach –  Connecting families with services, electronic newsletters –  Providing workshops, roundtables, school visits, early on training

for educational professionals –  Presentations at conferences, grand rounds –  Website information, social media –  Participation in stakeholder groups at the state level

Evolution of the Parent Position

•  Recognized long ago that there would be value to including a person who had personal experience with hearing loss on the team

•  As the pediatric audiology team in Mott evolved, it was clear that person should be a parent of a child with hearing loss

•  Worked with the Mott Hospital PFCC group to develop the position description as well as how we could partner with them for training and professional development of our PFCC Coordinator

Administrator’s Challenges

•  A parent of a child with hearing loss cannot bill for services in the clinic

•  The position is in line with the mission and goals of our Sound Support program –  Initially included partial funding for this position in the grant

renewal –  Once the position was filled, that funding was no longer available

for PFCC activities

•  Need to justify how having a PFCC Coordinator as a part of our team was benefitting the experience and quality of care for all of the patients in our clinic

It is All About Stories •  No matter the audience, it is the stories

about improved experiences or outcomes that mean the most

•  We have been fortunate in receiving generous donations for our loaner hearing aid program, expansion of our clinic space to add two more booths, and development of a pediatric vestibular program

•  Donors simply want to know how they are making a difference in the lives of children

Partnering With Patients and Families

Partnering with Providers and Staff

Ongoing Support Includes

• Making phone calls to families after initial diagnosis of hearing loss

• Making contacts and interventions to help prevent loss to follow-up, including addressing obstacles to care

• Connecting families to local education services

Ongoing Support Continued

•  Providing opportunities for families to meet other parents of children with hearing loss

•  Orchestrating the Family Matters! workshop for families of DHH children in collaboration with Michigan EHDI and Hands and Voices

Emerging Support Services •  Orientation class for families of children with newly

identified hearing loss •  Quarterly family-centered email newsletter •  Focus group to address the specific needs as well

as loss to follow-up prevention focusing on Auditory Neuropathy patients

•  Family focused webinar series •  Development of a program website including

educational videos about hearing loss, shared family stories, and other resources

Uses of Patient and Family Input •  Develop measures to track improvements •  Increase service excellence, quality of programs, and

optimal outcomes for patients and families •  Enhance relationships between families and providers •  Create fresh perspective on how services can be

delivered •  Encourage families to become more actively engaged

recipients of care and services •  Promote visibility of programs and services in the

community

Questions

When we consider the patient and family perspective, our patients are best equipped to succeed!