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Innovation in action: e-Patient Dave’s tips on patient access and transparency in healthcare

Dave deBronkart, known as “e-Patient Dave,” was told it was probable he had only 24 weeks to survive Stage 4 kidney cancer in 2007. Then he beat metastatic cancer and became a blogger, health-policy advisor, and international keynote speaker, using his story to speak to the value of patient engagement and empowerment. 

I am here and evangelizing because there is hope for things to be done better and differently,” he says. 

He is co-founder and chair emeritus of the Society for Participatory Medicine and advocates regularly about how healthcare is delivered, accessed, and used by patients. In a recent webinar with NRC Health, Strategic Advisor Ryan Donohue posed some questions about healthcare’s relationship revolution. Here are deBronkart’s top pieces of advice: 

1. If you are a patient, speak up and express yourself. Some people are shocked by their diagnosis, so they look to doctors to fix them without asking what they can do. Others just want to be alone, and would rather Google information on their own than ask another person. But being an engaged patient often helps. In deBronkart’s case, his doctor knew he was an online type of guy, so he suggested where deBronkart could find the best material online. In six months, he was cured.

“My oncologist said he wasn’t sure how well I would have survived if I wasn’t engaged,” he said. 

DeBronkart knows that patient communities also played a large role in his recovery. “The patient community helped me survive,” he says. “Finding a good patient community is a lot of work, but don’t be afraid to go out and search for those communities.” 

2. Engage with ChatGPT to inform and empower yourself along the journey. DeBronkart can’t emphasize enough the importance of getting a free account with ChatGPT and using it.

“It’s not like Googling—it’s beyond transforming,” he says. He advises asking ChatGPT to gain more information about your healthcare issue or to take a guided tour of what you want to know more about. You even can provide lab results and ask it what questions you should ask your doctor about them. “This goes beyond googling about kidney cancer,” he says. “This technology is altering the nature of how to interact with doctors. This is big stuff—don’t just read about it, get in and discover for yourself. It’s a wonderful way to prepare for your next visit.  

“Conversely, healthcare systems don’t want to enter a world where all the worker bees have experience with ChatGPT, but the C-suite does not,” he adds, on the side of hospital organizations. “Your competitors will make AI work. Some hospitals already have AI wired into their EMRs.” 

3. Regularly check your EMRs and leverage your personal data for insights. Regarding medical records, deBronkart says there are two reasons patients should check their records routinely. First, most medical records contain Humans are under time pressure, and whether it’s a minor mistake or a major one, it’s worth correcting. Secondly, you may forget your physician’s advice or orders, and it’s a great way to follow up on what you’re supposed to do.

“This is something a patient with no medical training can do to help make the whole clinical relationship better,” deBronkart says. 

Furthermore, as wearable tech evolves to track data like oxygen intake, blood pressure, and sleep patterns, patients will often have more information than their physicians. This will allow patients to be more proactive, bringing data along with them to appointments to share healthcare patterns with their doctors. 

4. If you are a healthcare provider, the best way to empower patients and demonstrate Human Understanding is to listen.

DeBronkart’s advice is to create a project to train people how to listen—not just hear, but hear answers they aren’t expecting. Ask patients to write down their thoughts, or ask them to explain more about what they’re telling you. Go to waiting rooms or cafeterias and ask, “Is there anything I can answer for you?” 

“People take action in the face of a need,” he says. “They are stopped if they are disempowered. Increasing a patient’s ability and capacity to make decisions about what they want is helping them move in the right direction. Ask what people need, and see what it takes to get it. It will be empowering.” 

Catch the full webcast on-demand!

For more: Check out deBronkart’s blog or watch his TEDTalk Let Patients Help, which went viral and spent years in the top half of the most viewed TEDTalks of all time, with more than half a million views. (Volunteers have added subtitles in 26 languages, indicating the global appeal of his message.)