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Our Saving Grace

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By Nadine Robin, Health IT Programs Director
Louisiana Health Care Quality Forum

A little more than a month ago, we announced a video challenge designed to showcase Louisiana’s engaged patients, and last week, we announced the winners of that challenge and shared their videos on our Facebook page. We were excited to receive so many entries – it was wonderful to watch those videos and see how our fellow Louisianans are taking proactive roles in their health and health care – but there was one video in particular that truly inspired us and was thus named the winner of the grand prize, an Apple iPad® Air.

The video submitted by 13-year-old Grace Kennedy, daughter of William and Angela Kennedy of Bernice, La., shared an incredible tale of a young lady who is more engaged in and knowledgeable about her health and health care than many adults. Grace, at age 11, was diagnosed with cystic fibrosis, which the Cystic Fibrosis Foundation describes as “a life-threatening, genetic disease that causes lung infections and progressively limits the ability to breathe.”

Grace – at 13 – is a master of the patient portal, a guru of wearable devices and an expert decision-maker in her own health and health care. She has a team of health care providers that spans two states; she receives care from some wonderful providers in her area as well as experts in her condition at Texas Children’s Hospital. Grace uses her patient portal and the data gleaned from her wearable devices, not to mention her own research into her condition, to keep them all informed so that her care is coordinated and as seamless as possible. In her video, Grace refers to health IT as her “saving Grace” when it comes to her health and health care, and we can’t think of a better way to describe it.

In short, Grace is the very definition of an engaged patient, and we applaud her for being such an amazing inspiration and example to others. Yet we would be remiss if we did not also applaud her parents, William and Angela, for teaching Grace the value of being so engaged in her health.

As parents, we teach our children many things, beginning when they are very young – to wash their hands, to look both ways before crossing the street, to never talk to strangers. As they grow up, these lessons become more complex – the value of hard work, how to make good decisions, how to plan for the future. But sadly, we rarely include lessons about the importance of being proactive in their own health and health care.

Grace’s parents have clearly made those lessons a priority for her. They’ve given her access to all the tools they can find to help her engage in her health and taught her to use those tools, and in doing so, they’ve helped Grace become the most important person on her care team. Like Grace, they are an inspiration.

So to Grace, we offer heartfelt and sincere congratulations for being the winner of the video challenge, and to both Grace and her family, we share our thanks for being shining examples of patient engagement in our state.

Editor’s Note: Scott Zeigler, 41, of Baton Rouge, La., was named the second place winner in the video challenge. Zeigler, in his video, described how his family uses patient portals and mobile apps to track and manage their care and discusses how his family incorporates fun, physical activity to stay healthy. The third place winner was M.E. Boogaerts, 5, of Shreveport, La., the daughter of Charles and Anna Boogaerts. In her video, M.E. provides an enthusiastic description of how she stays active and healthy by riding her bicycle, jumping on her trampoline and other physical activities. Their videos may be viewed on the Your Health In Your Hands Facebook page.

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Guest Monday, 20 May 2019