• Article
  • October 19, 2015

The Profound Impact of Patients as Advocates

Patient advocates will shape the future of health care.

By Kelly Wolfe

Maisy Martindale and her family visited Rep. Keith Ellison’s office on Capitol Hill in June.
Maisy Martindale and her family visited Rep. Keith Ellison’s office on Capitol Hill in June.

The first time I saw Maisy, she was giving Minnesota Governor Mark Dayton a hug in the hallway of our hospital. Unfazed by his position, she offered him a hug and a smile. She was only six at the time. Two years later, I witnessed another authentic Maisy moment while she sang Annie's "Tomorrow" to Congressman Keith Ellison (D-MN). He was in awe.

The power of those encounters was something I could never—even with more than a decade of lobbying experience—rival with any data or fact sheet. Governor Dayton and Congressman Ellison will remember Maisy and her experience because she brought herself and her story. Nothing more, nothing less.

To meet Maisy, you'd never know her difficult medical journey. She has undergone 32 surgeries including a skull reconstruction and tracheotomy. And she talks with great enthusiasm about how she has spent most of her early years inside our hospital. She's a reminder of the mission that drives every children's hospital. And she has become a persuasive advocate. We've used her story to advocate for parity in telemedicine in the state legislature. She was our Speak Now for Kids All-Star at this year's CHA Family Advocacy Day and is a powerful example of the importance of Medicaid and pediatric specialists.

Mike Johnson, like Maisy, also has a compelling story to share. A few years ago, I accompanied Mike and his family to Washington, D.C., to advocate for Children's Health Graduate Medical Education (CHGME) funding. At 13, after suffering from headaches for years, Mike and his family came to our emergency department. Ultimately, he was diagnosed and treated for a brain tumor and is now cancer-free. But this happy ending came after a difficult year of appointment delays because of a lack of specialists; it was finally an emergency episode that brought Mike to Children's. Now, I could've met with legislators and rattled off statistics about the number of specialists we train or why medical education is important, but hearing Mike tell his story was far more impactful, and it helped raise the urgency of an issue that for many lawmakers was not a priority.

Finding heartfelt patient stories isn't hard, but supporting families and cultivating their interest in becoming advocates takes commitment and compassion. And for busy and overwhelmed families, they may be intimidated by the process.

Thanks to the interest of families like Maisy's and Mike's, we started the Families as Partners (FAP) program in 2007 to coordinate and support family involvement throughout the organization. Families can be involved in ways that suit their needs and strengths, including advocating for policy issues on behalf of children's hospitals or attending Family Advocacy Day. This year, we have 292 parents participating in our FAP program.

Children's also formed a Youth Advisory Council in 2003 to help us understand what's important to children, teens and siblings during hospital stays and visits. This council provides our organization with some of the best and most effective advocates at the state capitol, engaging in issues such as anti-bullying legislation or protecting children's hospitals from Medicaid cuts. We've not only developed new teen advocates but future leaders in the process.

Children's Hospitals Today Editorial Advisory Council Member Kelly Wolfe is public policy director at Children's Hospitals and Clinics of Minnesota. Send questions or comments to magazine@childrenshospitals.org.