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The Rise of the Empowered Patient

Once marginalized, consumers are taking more control over their own treatments

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Rise of the Empowered Patient

Taking Charge

As an example of today’s trend toward individual empowerment in healthcare, consider the experience of Lisa Lindell, who has no medical training or specialized health knowledge. In 2003, she stood by the hospital bed of her severely ailing husband, Curtis, and had a nagging suspicion that something about his treatment was going terribly wrong. “At first, like most patients, I thought my job was to stay out of the way of the doctors,” recalls Lindell, an accountant for a construction company. “It soon became obvious that if I didn’t manage his care, he wasn’t going to get any.”

Curtis, 44, had been admitted to a Houston hospital for third-degree burns. For weeks, a revolving door of doctors and nurses pronounced him in stable condition. But as Lisa kept vigil by his bedside, she was watching Curtis deteriorate. Fearing for her husband’s life, Lindell decided to take matters into her own hands. With the help of her sister, a registered nurse, she began to ask questions, research his symptoms and seek out specialists.

During Curtis’s 108-day stay in the hospital, it was Lindell and her sister who pushed for surgery on his gallbladder, which unbeknownst to the doctors at the time, was critically infected. And it was the two women who called for an infectious disease specialist when Curtis’s lungs collapsed, and who pushed for the antibiotic, imipenem, that ultimately saved his life. “My husband wouldn’t be here today if not for my sister and me,” Lindell says. Her message to patients? “It’s critically important that you know as much as you can when it comes to your healthcare,” she says.

There are healthcare experts who wholeheartedly agree. “The person suffering from a disease should participate in developing a healthcare plan,” says Lucien Engelen, Health 2.0 ambassador at Radboud University Nijmegen Medical Center in the Netherlands. “In most cases, a patient only gets asked in the last stage, perhaps just to fine-tune a treatment plan.” He believes that planning should include the patient’s family, because they will help the patient fight the disease. “These are the experts—the patient and close family members—who know what it means to experience a specific disease in a particular instance,” Engelen says, “and they must face the challenge of balancing choices based on treatment efficacy and safety.”

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Article: The Rise of the Empowered Patient | e-Patients.net says:

September 24th, 2010 - 1:03PM

[...] a Scientific American magazine, has a long new article The Rise of the Empowered Patient. It quotes, among others, our friend Lucien Engelen (@Zorg20, which is Dutch for Health 2.0). [...]

Trisha Torrey says:

September 24th, 2010 - 1:47PM

Excellent overview of this new patient mindset, based on frustration and loss of trust.

Might I also add that no one teaches us to be empowered patients. Too often we are self-taught after being backed into corners that require we take charge of our own care.

How much better off we would all be (patients, providers, payers, industry) if the playing field was leveled by teaching all of us to partner and collaborate!

Trisha Torrey
Every Patient’s Advocate
Author of: You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Health Care You Deserve)

The Rise of the Empowered Patient (Scientific American Pathways) « e-Patient Dave says:

September 24th, 2010 - 2:09PM

[...] The Rise of the Empowered Patient (Scientific American Pathways) Pathways, a Scientific American magazine, has a long new article The Rise of the Empowered Patient. [...]

Carolyn Thomas says:

September 24th, 2010 - 5:26PM

Excellent article, Nicholas (and Molly!)

Dr. Scott Haig‘s November ’07 Time magazine essay called ‘When The Patient Is A Googler’ (a scathingly arrogant attack, by the way) describes his Googling patients as “suspicious and distrustful, their pressured sentences bursting with misused, mispronounced words and half-baked ideas.”

Just a tad oversensitive to having his ‘Doctor Knows Best’ authority undermined, perhaps?

WebMD alone gets over 40 million visits every month. Up to 80% of internet users report they have sought medical information online. And a reported two-thirds of patients apparently want their doctors to recommend reliable website resources for them. The times, they are a-changin’…

But online searches are not just for the “empowered patient” – they can also be a diagnostic tool for physicians. Australian researchers reported in the British Medical Journal on a study that chose 3-5 search terms for hard-to-diagnose illnesses, and then looked at how Google did compared with reports published in the New England Journal of Medicine. The study found that doctors who use Google to help diagnose difficult cases can find a correct diagnosis over 60% of the time.

I wish that the ER doc who sent me home in mid-heart attack with an acid reflux misdiagnosis had instead tried Googling my symptoms (crushing chest pain, nausea, sweating and pain radiating down my left arm).

I’m now fairly confident that Google would have steered him to the correct diagnosis.

Here’s what I’ve learned about heart attack misdiagnoses in women since that day in May 2008: we now know that one in 50 people will be misdiagnosed and sent home from the E.R. in mid-heart attack, UNLESS you happen to be a woman under the age of 55, in which case your odds of being sent home are SEVEN TIMES greater.

That crisis – and then being invited to later attend the annual WomenHeart Science & Leadership Symposium for Women With Heart Disease at Mayo Clinic – led me to launch HEART SISTERS, what I thought would be just a little blog about women and heart disease – our #1 killer.

More on empowered patients at “What Doctors Really Think of Medical Googlers” at:

http://www.myheartsisters.org/2009/08/19/med-google/

Empowered Patients says:

September 24th, 2010 - 9:07PM

[...] article from Pathways emphasizes some of these points, so I thought I’d share!  Here’s the link to the complete [...]

Tweets that mention Pathways » The Rise of the Empowered Patient -- Topsy.com says:

September 25th, 2010 - 4:50AM

[...] This post was mentioned on Twitter by Bora Zivkovic, Shwen Gwee, Jeff Benabio, MD, Trisha Torrey, Brian Mossop and others. Brian Mossop said: Consumers now taking control of their own treatments. http://bit.ly/aHN8Et /via @sciam pathways. (cc @SusannahFox @gfry) [...]

Quick Links | A Blog Around The Clock says:

September 25th, 2010 - 4:02PM

[...] The Rise of the Empowered Patient [...]

The Online Patient’s Bill of Rights | Stop Moles! says:

September 27th, 2010 - 5:01PM

[...] needs empowered patients. Empowered patients need protection. Following President Obama’s kick-off of the [...]

Amara Russell says:

September 29th, 2010 - 9:01AM

There has been a Pregnant Patient’s Bill of Rights for many years:
http://www.aimsusa.org/ppbr.htm
The concerted efforts of women to gain empowerment in birth have been actively resisted & opposed at every turn (with so many examples over the decades they fill books)… a recent one being the “catch-22″ standard of care revision for VBAC (vaginal birth after cesarean) created by the professional trade union ACOG and imposed on birthing mothers by it’s members. This specialty for one has a very long way to go to achieve their “culture shift”; they first have to want to…and they show no signs of anything like that collectively. The bright side is that the ‘medical standards of care’ make woman-centered midwifery care the clearly and obviously superior choice, because the many advantages of this care model are brilliantly apparent in contrast…only one of which is the consistently superior outcomes. Empowerment can be had NOW just outside the medical model in the realm of holistic care. The wisdom & knowledge by which humanity has evolved is trustworthy because it has stood the test of time…and people are returning to it in droves.

Davis Liu, MD says:

October 5th, 2010 - 1:54PM

Excellent articles that depicts the challenges for doctors and patients navigating this new world. Patients will need the tools to educate themselves which is why I blog and write because no one teaches people to be empowered patients.

Davis Liu, MD
Author of Stay Healthy, Live Longer Spend Wisely – Making Intelligent Choices In America’s Healthcare System
(available in hardcover, Kindle, and iBooks)
Blog: http://www.davisliumd.blogspot.com 
Twitter: davisliumd 

Julia Hallisy says:

October 5th, 2010 - 5:18PM

Thank you for this informative article. Our organization is responding to the needs of empowered patients through online resources, community training, books, videos and a patient survey. Please visit our website at http://www.EmpoweredPatientCoalition.org for more information.

The patient empowerment movement has made great strides and we continue to educate and assist patients who realize that they need information, support and confidence to improve their health care experiences and outcomes.

Outside the silo says:

October 18th, 2010 - 5:43AM

[...] voice of patient engagement” – which pointed me to a Scientific American article on The Rise of the Empowered Patient. It’s worth reading. “An empowered patient is someone who has figured out that healthcare [...]

Health Digital Check-Up: E-Patient Connections | Edelman Digital says:

October 20th, 2010 - 7:20PM

[...] many may see the term as fairly hum-drum by now, the participatory medicine movement is really just heating up. According to e-patient Dave, more and more patients are being included in “leaders in health” [...]

uma says:

November 15th, 2010 - 9:49AM

Gone are the days when the doctor was a God whom we could blindly believe and rely on as a patient. Googling helps me understand my own physical condition and others too; come up with questions for whom i am one of the many but for my loved ones i am the only one !So i need answers to Why me only? And here is one experience that drives my nuts. In my 24th week of pregnancy the gynaecolgist saw a problem in the sonography reports.However never told me the impact or risk . Never told me to just shut shop , relax and reduce the salt intake . Had she done that i would not feel so guilty to bring a premie lowbirth weight baby to fight for survival in the NICU. That incident has forced me to google, contact individuals with the same problem and procure maximum information.Thanks to Google and all the networking sites I am a very well read mother now!

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