More Than A Disease

Humanizing healthcare means valuing and supporting the individual rather than the disease. 

“You can’t wait until life isn’t hard anymore for you to decide to be happy.” 

This is what former America’s Got Talent contestant Jane “Nightbirde” Marczewki said following a stirring performance of her original song, “It’s O.K.” From Zanesville, she battled cancer for four years and returned to the show to perform. “It’s O.K. is the story of the last year of my life,” she told the audience of the cancer that was still in her lungs, spine and liver. “It’s important that everyone knows I’m so much more than the bad things that happen to me.” 

A couple of weeks after her performance, cancer took Nightbirde. In an NBC interview, her family said: “Those who knew her enjoyed her larger-than-life personality and sense of humor. She had a witty joke for every occasion—even if the joke was on her."

You can become your disease. Or you can live life and be you. That’s what Nighbirde was telling us, and the same message rang true during our In-Value-Able Conference that wrapped up on February 9. Keynote speaker Drew Mendelow shared how his diabetes diagnosis inspired him to develop the app T1D1, which stands for Type I from Day 1. His goal was to simplify his diabetes management by developing a tool to track glucose levels. Drew could have got stuck in the diagnosis, but instead he leveraged it as a way to help others like him. Now, T1D1 has more than 41,000 downloads in 50 countries. 

Comics creator Sam Hester spoke about using graphic medicine to illustrate patients’ needs and goals. She shared how drawing helps connect patients and the healthcare system. In her case, her mother suffers from Parkinson’s disease, which makes it difficult for her to speak—and her mother’s goal was to walk. So, Sam used medical drawings to share this with caregivers and medical professionals. It led to more empathy, understanding, peace of mind, and kept the focus on her mother’s goal to walk. 

With over 60 percent of our employee population and their dependents inflicted with a common chronic condition, how can employers create a culture that supports employees so they do not become the disease(s)? What resources can we offer and how should we communicate those in a way that our employees recognize that rather than a “do this, don’t do that” approach, there’s a focus on the whole person? 

There’s a strong business case for developing a culture of caring. According to a Gallup study, strong organizational culture increases key performance metrics. Specifically, employers who participated in the firm’s culture-building program experienced a 25% growth in workforce, 85% net profit increase, and a 138% boost in patronage during a three-year period. 

It’s one thing to talk about being “all about the people.” It’s another to implement and nurture a culture that humanizes healthcare and gives employees the support and tools they need to do life without becoming their disease.

Inspired by Nightbirde, Drew and Sam, here are some ways to start the conversation at the top. 

Define what you stand for. What matters to your business and to your people? Clarify your mission, vision, and brand. Consider how these tenants show who you are as a company to employees, customers, and the community. How do you support employees from a holistic perspective, in ways that transcend their job descriptions.

Get everyone on the same page. This is all about speaking the same language. When employees understand the culture and leadership sets the tone by living it, there is connectivity and collaboration. And from a healthcare and wellness standpoint, alignment establishes a common ground. 

Drive adoption. Culture comes to life when it is reflected in your company’s policies and processes, and that includes the way we communicate healthcare and wellness resources. Then, employees can feel as if they belong to something bigger than the next project or deadline. A cohesive team where individuals are respected as an important voice for the group brings humanity back into the equation. 

Sustain a resilient culture. What makes a culture stick? We evolve as individuals and as companies, and this carries over to our health status and wellness struggles. Diseases can progress or improve. Mental health can swing like a pendulum. We must be flexible while staying true to our mission and vision. This speaks to resiliency and that, “It’s O.K.” spirit. Sustaining a supportive culture requires encouraging team members to be empathetic. 

Going back to Drew and his diabetes management app, people have described it as a game-changer in their personal lives. As employers, how can we be game changers and inspire focus, connection, understanding, and support? Let’s keep this conversation going.

About Health Action Council 
Health Action Council is a not-for-profit 501(c)(6) organization representing mid-and large-size employers that enhance human and economic health through thought leadership, innovative services, and collaboration. It provides value to its members by facilitating projects that improve the quality and moderate the cost of healthcare purchased by its members for their employees, dependents, and retirees. Health Action Council also collaborates with key stakeholders – health plans, physicians, hospitals, and the pharmaceutical industry – to improve the quality and efficiency of healthcare in the community.