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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

Electronic Opportunities

Some advocates say the Internet is the best starting point: a virtual gold mine of medical information. “Patients can learn a lot online,” says Torrey. “It’s just important that any information you find online is verifiable.” Research shows that many patients already take advantage of such opportunities. More than 80 percent of U.S. adults say they turn to the Internet as one of their first sources for medical information, according to a recent survey by the Pew Internet & American Life Project.

Patients today are going beyond basic Web research to interactive sites where they can seek advice and, in many cases, chat about their physical and emotional symptoms. For example, CureTogether (www.curetogether.com), a destination for patients to share medical information, has active online communities for more than 350 health conditions, and Diabetic Connect (www.diabeticconnect.com) boasts more than 35,000 registered users.

“The Internet is changing what people know about medicine, creating much more of a symmetry between patients and providers,” says Susannah Fox, researcher at the Pew Internet & American Life Project. “When people have a medical question and need an answer, the Internet allows them, in realtime, to quickly answer it. But it also allows them to dive deeply into a topic and get industrial strength information, instead of consumer strength— sometimes through their peers.”

Although the Internet provides a range of healthcare information to people in any area, it comes with caveats. “Using the Internet provides good information and bad information,” says Judy Swindle, manager of social services and patient advocacy at OSF St. Joseph Medical Center in Bloomington, Ill. “On the good side, patients have more knowledge about possible healthcare options. On the bad side, patients don’t always verify online sources. Anyone can call himself or herself a doctor and put up a Web site.”

Nevertheless, Swindle and her colleagues use the Internet and social media to inform patients. “We have computer stations at the hospital, where patients can access information,” Swindle says. “Over the past year, we have Twittered several surgeries—everything from brain surgery to a birth. Our purpose in doing the live Tweets is to focus on patient education. This way, if there are individuals that need the particular surgery, they might have a little insight as to what to expect. Our followers are from the community as well as all over the country.”

Engelen believes in further expanding the online options. “Healthcare providers need to inform patients about medical options in new ways, such as through social media,” he says. Although some experts might not like this approach, “it will be thrust upon us,” Engelen asserts. “As patients gain access to more information, whatever the source, the classical medical approach of ‘experts know what’s best for the patient’ will no longer work. We are stepping into an era of shared decision making, when physicians and patients will choose the best therapy together.”

When asked if today’s patients already take a more active role in their health, Swindle says, “I think so. People know they need to make informed decisions, and patients now are more knowledgeable of the benefits and burdens of a particular treatment or surgery.” For example, she describes a patient in his 80s who had been very active until he needed heart surgery. “At first, he declined it,” she recalls. “Then, he did some research on his options and the likely outcomes, and he changed his mind.” The patient opted for the surgery. “He’s doing well and is active again,” says Swindle.

Despite the impact of the Internet on empowering patients, more can be done. “The Internet era already changes what patients expect,” says Engelen. “They want healthcare that is available 24/7. Patients expect access to healthcare information that includes choices and options. So far—in my homeland, the Netherlands, at least—healthcare does not offer that option.”

In addition to finding information on treatments, patients can use technology to keep track of their medical records. According to Lenore Janecek, founder of Save the Patient (www.savethepatient.org), an advocacy organization dedicated to empowering patients, “We need to have a concerted effort to educate people, and make them aware of the fact that it’s their right to have this information at their fingertips.” Save the Patient is currently working with a technology company to develop flash drives the size of a key chain, on which patients can carry and access their personal health records.

In the meantime, patients do not feel in control of their records. “From the perspective of average patients,” says Engelen, “their healthcare has been taken away. Their data are being kept from them, and choices are being made for them.”

To gain more control of those choices, some consumers evaluate healthcare providers (mostly at sites like www.rateMDs.com), so that other patients can make informed decisions in selecting physicians. For example, Angie’s List (www.angieslist.com), which requires users to pay to access doctor ratings, has posted patient ratings of more than 6,000 physicians.

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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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