The Navigation Project

ENERGY IN ACTION - EPISODE 072

Lauren Kopsick and Ivy Braun are the founders of the Healthcare Navigation Project, formerly known as Parent It Forward. This is the first independent public healthcare literacy and life care project for all youth as they transition to adult care. They share their advice for transitional planning after pediatric care.

EPISODE HIGHLIGHTS

Can you share what The Healthcare Navigation Project does?

We consist of five modules which includes basic healthcare navigation, navigating specialty healthcare, advocating for mental health, let's talk pharmacy and customer care and the future of healthcare. The program starts with basic healthcare navigation-- learning the 27 keywords you need to know and will teach you about developments and changes so patients and families are informed and they can share information with their doctors. This module also teaches patients how to pick a physician, about body language and telephone skills. A script is provided to call a physician's office so they know what questions they need to ask. In another module, we practice calling pharmacists and learning about medications and how to get them. In another module, we call 211, which is the keeper of every service for a state.

What are the five guiding principles for advocating?

If it doesn't make sense to you, it probably doesn't make sense and you shouldn't stop until you can make sense of it. 2. People are people-- good, bad and indifferent, and you don't have to engage with someone who makes you feel uncomfortable. 3. Research, research and more research. 4. Never give up anything once you have it. 5. The Patient Centered Medical Home.

Have you presented to rare disease groups?

We are working with the Taproot Foundation which acts as a recruiting firm for nonprofits. They're helping us with a program that will be in January 2023.

What is the importance of sharing what we know with others to build their healthcare knowledge and move expectations forward?

Patients and users of healthcare are the customers of the healthcare system, so if you're unhappy with a service, you have to push it forward. Learn the system and how to push forward and ask about other options. Keep pushing boundaries.

LINKS & RESOURCES MENTIONED

The Healthcare Navigation Project

https://thehealthcarenavigationproject.org/

National Committee of Quality Assurance

https://www.ncqa.org/

Got Transition

https://gottransition.org/

Taproot Foundation

https://taprootfoundation.org/

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Website

https://www.mitoaction.org/