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My Health Counts! e-Patients

 

 

 

As advances in technology and the internet bring us closer to information and each other, a new world of Participatory Medicine is evolving in which networked patients are shifting from mere passengers to responsible drivers of their health. My Health Counts! e-Patients explores what it means to be an e-patient in this information age--empowered, engaged, equipped and enabled. 

 

 

 

Host Susan Hunt is joined by Lygeia Ricciardi, senior policy advisor for Consumer e-Health at the U.S. Department of Health and Human Services and “e-patient Dave” deBronkart, to discuss how technology is creating this new dynamic in how information is delivered, accessed and used by patients. Technology--from personal health records, patient portals and home monitoring devices to email and social networking sites can help you make better decisions about your health and health care.

“The medical field is undergoing all this transformation and it’s important for us as patients not just to sit back and wait but to get involved” says Ricciardi.¬†

When Dave deBronkart learned he had a rare and terminal cancer, he turned to a group of fellow patients online -- and found the medical treatment that saved his life. After beating this unbeatable disease Dave became a blogger, keynote speaker and health policy advisor. Now he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

“What are my odds of having ever run in to anybody else who had kidney cancer?¬† Very, very slight, and yet I got connected with this expert community on ACOR.org, and I got superb advice not just on treatment options, but on how to deal with the side effects,” recalls deBronkart. “Today my oncologist says there’s no question the interleukin saved me and killed my tumors, but he said, ‘You were really sick and I’m not sure you could have tolerated enough to do the job if you hadn’t been so informed about the side effects so you were prepared to see it through.’”

“I don’t say that anybody should be like me. I do say that when somebody wants to get actively involved, we should give them all the information and tools and resources and advocates that we can. My appeal is not the medical establishment is corrupt or this is all a bunch of bologna. My appeal is let patients help.”

 

“We’re at a really important turning point, because traditionally the medical field has lagged way beyond many other industries in terms of adoption of technology, and that is changing through a set of incentives for doctors and hospitals to adopt technology and to use it in ways that really improve care,” stresses Ricciardi. “For the first time electronically many patients can get direct access to their own health record that previously would only live in an old-fashioned manila folder in a file cabinet in your doctor’s office. And increasingly now, you can get that information online and ideally, too, you can take it and you can plug it in to other kinds of apps and tools, even things on your smart phone, to use it in ways that are creative and that help you meet your own health goals. When a lot of people think about health information technology, they say, are we replacing the role of the doctor or changing it somehow, I don’t think of it that way at all.¬† I think of it as really augmenting and building on the kinds of relationships that we already have with our providers, and making that partnership a lot stronger.”

 

 
The My Health Counts! series is hosted by Susan Hunt. Susan Hunt began her broadcast career in Buffalo, New York, first as a radio news and sports reporter for WGR-AM radio and subsequently as Sandy Beach's news sidekick on WHTT-FM. However, it was her stint as co-host of PM Magazine that, to this day, resonates with Western New York audiences. Since then, Susan has hosted and produced numerous TV programs related to important health issues.
 
   

Susan is joined by “e-Patient” Dave deBronkart and Lygeia Ricciardi.

 

Connect with the panel

e-Patient Dave¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†     ¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†         Lygeia Ricciardi

Twitter: @ePatientDave      ¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†     ¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† Twitter: @Lygeia

Website: www.e-patientDave.com    ¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†     ¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†Website: http://www.healthit.gov

Facebook: http://facebook.com/ePatientDave

 
Watch the Program - My Health Counts! e-Patients
 
 

 


“I faced saying good bye to my mother, saying good bye to my daughter and, not to mention, my wife. And then I got to work. I looked for more information and more information and more information. Being an engaged patient is really what’s at the root of it. To me, that’s the most important ‘E’ because if you’re actively engaged as opposed to sitting back passively and saying, ‘I hope they fix me.’ “

e-Patient Dave, cancer survivor, blogger, speaker and health policy advisor. He is today the leading spokesman for patient engagement. Learn more about Dave’s story here.

“I have a two-year-old daughter, and when she was born, she was diagnosed with a hole in her heart. I am grateful to live in a time and place which surgery‚ÄĒeven surgery on a heart the size of a golf ball‚ÄĒis an option. This kind of procedure has undoubtedly saved many lives. But it’s not without risks. We didn’t like the idea of subjecting our baby to a procedure of such magnitude unless there was a clear case for it. Was surgery necessary?

 

Lygeia, e-patient and mom. She is also the senior policy advisor for Consumer e-Health at the U.S. Department of Health and Human Services. Learn more about Lygeia's story here.



¬†“I believe the culture of healthcare has changed. What it is today is so much different than what it was in 2000, which is hundreds of times different than 1990 or 1980 or 1970. Electronic medical records have created new opportunities and situations for us all to be more involved, which I think is fantastic.¬† They provide the information that is needed; have the potential to help contain costs; and can even prevent duplication of tests or procedures.”

 

Tom Dixon, e-patient. Learn more about Tom's story here.
 
 

For information about program 1, Partnering With Your Doctor, click here

For information about program 2, Fostering Self-Management, click here

For information about program 3, Quest for Quality, click here

For information about program 4, Living Well with Diabetes, click here

 

For information about program 5, Colorectal Cancer Screening Saves Lives!, click here

 

 
 

 

 

The MY Health Counts! Initiative is Presented By:
Major Funding By:
Foundation Support Provided By:
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Disclaimer: Information provided on the My Health Counts! pages of ThinkBright.org is for informational purposes only and should not be treated as medical, psychiatric, psychological or behavioral health care advice. Nothing contained on these pages is intended to be used for medical diagnosis or treatment or as a substitute for consultation with a qualified health care professional.