Nurse Care Coordinator Helps Family Navigate a Complex Care System

nam.edu/HighNeeds

Before Health Care Homes (HCH), our first son Konnor had a number of diagnoses related to congenital conditions that were spread out over the first several years of his life. As a result, he had received countless referrals to pediatric specialists from various different health care systems that were located 75-100 miles away from where we live.

As first-time parents, we struggled to take in each new diagnosis, learn about available treatments, and make difficult decisions. We were absorbing a lot of new information and were dealing with the emotions that came with it while also trying to keep up with all of the basic well-child exams with his pediatrician. We first-time parents, which brings its own stressors as well. There were countless appointments, several surgeries, and many related things to juggle (e.g. taking paid time off of work). Communication with his specialty physicians and primary pediatrician was, at times, confusing and fragmented. Transcripts, surgical reports, and

| Lisa W., caregiver

Care Model: Health Care Homes Minnesota

...by making a direct phone call to the care coordinator, we receive timely assistance with any labs or other orders that are needed, have acess to same-day appointments, and are able to make pre-operative appointments on short notice.”

Improving Care for High-Need PatientsPatient and Caregiver Testimonial Series

Lisa W., caregiver

Originally from Wisconsin, Lisa W. moved to Mankato, Minnesota for graduate school and she and her husband Scott then chose to make Mankato home for their family of four boys and 2 dogs. Their oldest son, Konnor, was born with congenital hydrocephalus and has since been diagnosed with a number of other neurological conditions, all of which will require ongoing care for the rest of his life. Lisa’s family

has appreciated having the opportunity to have their son be a patient benefitting from what is now Health Care Homes (HCH) for the past 13 years. In addition, Lisa and Scott have enjoyed participating

in an advisory capacity for Mankato Clinic’s patient/parent committee since its inception. HCH has had a significant impact on their entire family and they are compelled to share why.

hospital discharge instructions contained important information that was not always easily and successfully relayed between physicians.

HCH took communication, information-sharing, and our engagement in Konnor’s care to a whole new level. Thankfully, our pediatrician at the time was a champion of the HCH model before it was formally recognized in Minnesota! We were fortunate that Dr. Angela Townsend was able to show us how HCH could make things easier and better for us. Dr. Townsend engaged us early on in her efforts to pilot the implementation of what is now known as HCH and we are very grateful for that.

When we first joined HCH, we were assigned a nurse care coordinator. Because Konnor’s medical conditions will need to be monitored throughout his life, direct access to a nurse care coordinator has been invaluable. Our care coordinator knows his history, his specific needs, and many other things that are unique to him. Calling the general nurse line is difficult because there is so much information and medical history to share in a short amount of time. Instead, by making a direct phone call to the care coordinator, we receive timely assistance with any labs or other orders that are needed, have access to same-day appointments, and are able to make pre-operative appointments on short notice. Our care coordinator also checks in via phone regularly to make sure things are going smoothly. If Konnor has a surgery at a different, unaffiliated hospital in another community, our care coordinator calls to ensure that we have the information we need and that Konnor is doing well.

Health Care Homes has enabled and encouraged increased communication among Konnor’s seven specialty providers.”

We cannot express how extremely critical it has been to have a direct connection to a nurse who has direct access to Konnor’s pediatrician and can quickly consult with her as needed. At one particularly critical moment, we were able to have a timely conversation so that Konnor’s pediatrician could advocate on his behalf for surgical intervention with one of his specialists. In the end, this has made a remarkable difference in the care Konnor has received both in the short-term and long-term. Likewise, when he was experiencing some serious health issues, his

care coordinator presented at his school’s Independent Education Plan meeting to ensure that our responsive medical plans at school were adequate.

HCH has also enabled and encouraged increased communication among Konnor’s seven specialty providers. We are now able to have his labs drawn locally and shared with other relevant providers. After a significant orthopedic surgery on Konnor’s feet and legs, he was able to do his physical therapy and rehabilitation locally and his progress was easily shared with both his specialist (who lives much farther away) and his local pediatrician. This saved us from an enormous amount of travel time.

Over time, we have also had the opportunity to participate on an advisory committee and provide patient experience feedback that the clinic uses

About the Patient and Caregiver Testimonial SeriesThe National Academy of Medicine’s Patient and Caregiver Testimonial Series aims to illustrate how real people are impacted by models of care for high-need patients. The testimonials offer tangible ways in which these care models enable individuals and families to receive the best care possible. The series was made possible through the generous support of the Peterson Center on Healthcare.

To view additional testimonials, please visit nam.edu/HighNeeds.

to further improve their programs. We have taken part in focus groups, conversations, and meetings about the need for a local specialty pediatric clinic. This specialty pediatric clinic has now become a reality and has drastically reduced our need to drive 150-200 miles round-trip for a single 15-30 minute specialty appointment. We no longer need to take Konnor out of school for these appointments or use our valuable paid time off at work.

Overall, being active, integral partners in Konnor’s ongoing and overall care plan has made a significant difference in all of our lives. HCH simply makes sense, improves care coordination, reduces costs, and improves medical outcomes. Throughout this journey we have learned a great deal. The current health care system can be complicated for patients and families and we learned early on that we needed to be strong advocates for Konnor as well as programs like HCH. We are proud to do so, especially on behalf of those who have complex medical needs that are not in a position to do so. Programs like HCH change lives for better, including ours.

The Health Care Homes (HCH) program is one of the centerpieces of Minnesota’s health reform initiative. Through their focus on redesign of care delivery and meaningful engagement of patients in their care, Health Care Homes is transforming care - and lives - for millions of Minnesotans.

The goals of the model are to:

• Continue building a strong primary care foundation to ensure all Minnesotans have the opportunity to receive team-based, coordinated, patient-centered care.

• Increase care coordination and collaboration between primary care clinicians and community resources to support whole person care and facilitate the broader goals of improving population health and health equity.

• Improve the quality, experience, and value of care.

About Health Care Homes Minnesota