A custom collaboration with: Quintiles

The Rise of the Empowered Patient

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

Rise of the Empowered Patient

Tumbling Trust

In the Winter 2006 issue of the Hofstra Law Review, Maurice Hinchey, Democratic representative from New York, wrote: “The Vioxx crisis, the resulting investigations, and the ensuing lawsuits…strongly underscored a number of deficiencies within the FDA’s review and monitoring systems. Recent polls have shown that the agency has lost the public trust as well as the confidence of its employees.”

Most everyone in healthcare and biopharma knows about the Vioxx (rofecoxib) crisis to which Hinchey refers. This nonsteroidal anti-inflammatory blocks a form of the enzyme cyclooxygenase, known as COX -2. This enzyme plays a role in producing prostaglandins, which can lead to inflammation and pain. As a COX -2 inhibitor, Vioxx was approved as a treatment for pain from osteoarthritis, rheumatoid arthritis and migraines. Unfortunately, it also triggered safety concerns over its potential to increase heart attacks and strokes when used long-term at high dosage. Although the drug was a blockbuster, generating $2.5 billion in 2003, Merck withdrew Vioxx from the market in 2004.

For evidence of consumers’ deteriorating trust, Hinchey points to a 2006 Wall Street Journal Online/ Harris Interactive Health-Care Poll. A summary of this poll of 2,371 U.S. adults states that “the majority of U.S. adults think the U.S. Food and Drug Administration’s (FDA) most important function is to ensure the safety and efficacy of new prescription drugs.” It then adds that, “over the past two years, the public has become increasingly skeptical about the agency’s ability to meet that mission, with seven in 10 adults giving the FDA a negative rating.” Further, the report indicates that “large majorities across party lines say the FDA’s decisions are influenced by politics rather than medical science. All of this suggests the FDA is facing an uphill battle in the court of public opinion.”

This poll is merely one example of a growing trend of public discontent with the FDA. A similar study by the same group in 2004 found that 37 percent of those surveyed thought the FDA did only a fair or poor job of quickly bringing innovative medicines to the market. By 2006, that figure had climbed to 70 percent, quite a significant number considering the importance and authority of this federal agency. In addition, more than half of those polled—58 percent—thought that the FDA did only a fair or poor job of ensuring the safety and efficacy of new prescription drugs.

In large part, Representative Hinchey agrees, as he concluded his article with the somewhat grim assessment that, “unfortunately, the agency’s struggles with regulatory and statutory obstacles are keeping it from effectively executing its mandate.”

However, the FDA is just one of the health “authorities” in whom patients are losing trust. Various studies indicate that health providers make serious, sometimes deadly, mistakes with medications and other treatments. According to “Preventing Medication Errors: Quality Chasm Series,” a 2007 report from the Institute of Medicine of the National Academies, “The use of medications is ubiquitous. In any given week, more than four of five U.S. adults take at least one medication (prescription or over-the-counter [OTC] drug, vitamin/mineral, or herbal supplement), and almost a third take at least five different medications. Errors can occur with any of these products at any point in the medication-use process and in any care setting. The frequency of medication errors and preventable medication-related injuries represents a very serious cause for concern.” In the U.S. alone, states the report, medication errors injure 1.5 million people a year. And drug-related errors in U.S. hospitals incur costs of at least $3.5 billion a year.

Concerns about the FDA, along with countless stories of medical mishaps, provide a compelling and clear rationale for the growing public distrust of the pharmaceutical and healthcare industries. This distrust has colored many consumers’ expectations of their medicines and their perceptions of the patient’s status in the larger health enterprise. For instance, “The New Health Report”—a Quintiles-sponsored survey in 2010 of 144 executives in the biopharmaceutical industry, 129 managed care executives and 1,048 U.S. adults—found that 95 percent of patients, not so surprisingly, view the effectiveness of a treatment to be important. Moreover, safety and cost were ranked as important by 94 and 84 percent of the consumers, respectively. In terms of industry perception of patient influence, this survey also revealed that 60 percent of biopharmaceutical executives believe that in the past five years patients have been increasingly influential in determining which prescription drugs are available. Ironically, a whopping 70 percent of patients think that they’ve had virtually no influence on the availability of products. Instead, they indicated that they were taking matters into their own hands. For example, 45 percent of the patients reported they had made lifestyle changes in the past five years to avoid taking prescription drugs. By comparison, the biopharmaceutical executives polled thought this was true of only 6 percent of patients. These results reveal the ongoing disconnect between patients and biopharmaceutical companies.

The overall trends in patient empowerment, however, go beyond U.S. borders. “There’s rising demand,” says Sir Andrew Dillon, chief executive of the UK’s National Institute for Health and Clinical Excellence (NICE). “People expect more, and they know more—especially those living with a chronic illness. This puts added pressure on healthsystem providers.” At the same time, healthcare systems face reduced funding. “With very significantly tightened resources,” Dillon explains, “there is less money, in real terms, available for healthcare.” As a result, he says, healthcare systems “must reconcile that increasing demand with increasing cost.”

PrintShare  |
  • email
  • LinkedIn
  • del.icio.us
  • Digg
  • Facebook
  • Twitter

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:


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:
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!

Cardiovascular Deaths by Region

Consumer Health Resources:
Patients and their advocates have an unprecedented amount of information sources available to them

Follow Quintiles

Facebook   Twitter   RSS