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The power of patient advocacy

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Advocating for patient empowerment and transparency in healthcare

In this episode of NRC Health’s Patient No Longer podcast we explore the the importance of adopting an appreciative approach to healthcare.

Conversation

The power of patient advocacy Hosted by Ryan Donohue, thought leader, author, and strategic advisor with NRC Health

Podcast Guest

Dave “e-Patient Dave” deBronkart, a cancer survivor, blogger, and healthcare activist 

In this latest episode of Patient No Longer, deBronkart shares his story of how a cancer diagnosis helped him become a more empowered, engaged patient, which improved his health and led to a new calling for him.

Highlights

Empowered and Engaged Patients Save Lives. deBronkart shares his personal experience of being diagnosed with Stage Four kidney cancer and how being an engaged, empowered patient played a crucial role in his recovery. He emphasizes that empowered patients don’t ignore doctors; instead, they seek to collaborate with healthcare professionals and actively participate in their care.

It’s not about patients being in charge or thinking they know everything,” he says. “The traditional view of the patient’s role is that we are the helpless schlump who doesn’t know anything, so we come to the brilliant doctors and get told what to do. When somebody like me steps up and says to the oncologist, ‘How can I survive the side effects of this deadly treatment?’ I want medicine to listen and figure out how the patient can help.” 

deBronkart says he improved in less than a year, which was quite an achievement. His oncologist said he wasn’t sure he could have tolerated the medicine if deBronkart hadn’t been so prepared. 

“For people who wonder whether the patient should be empowered and engaged, my opinion is, it helped save my life,” deBronkart says. 

Patient Advocacy and Empowerment are Crucial. deBronkart discusses the role of patient advocacy and empowerment in improving healthcare. He recounts his experience of discovering errors in his medical record and how speaking out led to a broader conversation about patient engagement. He also highlights the significance of mentoring and collaboration between patients and healthcare professionals, emphasizing the need for a partnership approach to healthcare.

“I felt a calling because people were saying, ‘Say more about this,’ which led to a book I wrote in 2013 with my primary physician, Danny Sands, called Let Patients Help,” he says. “We must listen to what goes wrong and right in real time—and I mean promptly. Start listening more effectively, because you commit to finding meaningful things, and then you can amplify those.” 

Transparency and Informed Decision-Making Matter Too. deBronkart underscores the importance of transparency in healthcare, drawing parallels with other industries where consumers have access to information up He researched and negotiated the cost of a medical procedure, highlighting the need for putting information in the hands of consumers to help them make informed decisions.

“The powerful, transformational thing will be when everyone is required to publish prices,” he says. “When do you find out what the car costs after you bought it? Or what’s the bill for a meal? For healthcare leaders who are really interested in improving, solving, and addressing the cost problem, we can develop ways to put information in the hands of consumers. It reminds me of something I said in my book: We perform better if we’re informed better.”

Check out e-Patient Dave’s book Let Patients Help or listen to the full Patient No Longer episode to learn more. 


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