E-patients: What You Need to Know and How You Can Help Them

Patients are empowering themselves to become more involved drivers in their healthcare journey, many times turning to the Internet to obtain health information. And although the right information can be decidedly useful, plenty of information online can be out of date and plain wrong, and it’s what the patient does with that information that counts.

By Neil Versel

In the spirit of e-mail, e-commerce, e-books, and e-prescribing, it’s time to get familiar with the term “e-patients.” Only this time, the “e” doesn’t mean electronic. It stands for patients who are “equipped,” “enabled,” “empowered,” and “engaged” with information.

The term comes from the late Tom Ferguson, MD, who had written and lectured about empowered consumers of healthcare from 1975 until his death in 2006. Ferguson’s legacy lives in part through the Society for Participatory Medicine, incorporated in 2009 to serve empowered, engaged patients and encourage others to take more control over their own health and healthcare.

Ferguson saw healthcare as a partnership between healthcare professionals, patients, and support systems. According to the Society, “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Many patients are carrying the torch for the movement these days, but few as zestfully as a New Hampshire cancer-survivor-turned-patient-advocate named Dave deBronkart, aka “e-Patient Dave”.

DeBronkart wrote a book about his experience battling kidney cancer that had metastasized to his lung, Laugh, Sing and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and what healthcare can learn from it), and now has made it his job to preach the word of patient empowerment.

Initially after his 2007 cancer diagnosis, deBronkart acted like many other people who have had to confront their own mortality. He turned to the Internet and started asking questions of his doctor, who happened to be pretty tech-savvy himself. Soon, Daniel Z. Sands, MD, director of medical informatics at Cisco Systems, primary care physician at Beth Israel Deaconess Medical Center in Boston (BIDMC), and MDNG editorial board member, became deBronkart’s physician and partner in care.

“At no point did I decide that I was going to take this all into my own hands,” deBronkart says. “I needed expert help.”

A marketing consultant with good computer skills, deBronkart already was a user of BIDMC’s PatientSite portal—which Sands helped create—before the cancer diagnosis. “It’s not something that all of a sudden came along when I got sick,” he notes.

DeBronkart found some reassurance and a community of other oncology patients from the public website of the Association of Cancer Online Resources: “It’s the best source of information on the Internet about what to do about kidney cancer,” deBronkart says. He took the information he gathered and started asking a lot of questions. “If I find something, I ask, ‘What do you think about that?’” deBronkart says.

His engagement in his own care helped deBronkart through multiple rounds of treatment, and now his cancer is in remission. deBronkart quit his job last year to become a full-time advocate for e-patients as co-chair of the Society for Participatory Medicine. “Much to my surprise, I went from almost dead from cancer in two years to chairman of a medical society,” he says.

As deBronkart can attest to simply by being alive, patient engagement often pays off. A 2009 study from the AARP found that the 30-day hospital readmission rate for patients with chronic diseases who were not much engaged in their care was twice that of those who did take a more active role. The researchers found similar trends with medical errors, care coordination, and communication between the patients’ healthcare providers.

The Internet, of course, has changed the dynamic of the physician-patient relationship and of disease care in that information is more accessible than ever before and that patients can more readily find others with similar conditions. A Harris Interactive poll published in August found that 88% of adult Internet users in the US searched for health information at least once in the last year, and 53% said they discussed their online findings with a health professional.

The wide availability of information works two ways, though. “Doctors use Google just like patients,” notes Ronald Epstein, MD, professor of family medicine and director, Center for Communication and Disparities Research, University of Rochester. “In a way, we’ve got a shared resource. As physicians, we no longer have claim to secret knowledge.”

While that can be good for patients, it’s often hard to figure out which information is helpful and which is inappropriate, out of date, or just plain wrong.

A survey from Epocrates, producer of electronic medical reference databases, found that more than 60% of primary care physicians like it when patients bring in information they found on the Internet and believe it helps them communicate with their patients. Yet only 5% of the doctors completely agreed with the statement that such information is useful to treatment.

A decade ago, Charles M. Kilo, MD, now chief medical officer of Oregon Health & Science University, founded GreenField Health, a Portland, Oregon, practice set up as a new approach to primary care. Among other things, the practice focuses on empowering patients with information and building strong patient-physician relationships.

“Engaging patients is an evidence-based intervention to try to improve care,” says Kilo. “Just having access to information doesn’t necessarily mean you are more empowered, but it’s a good start.”

Sure, Kilo does have some reservations. “The Internet is not a great tool for patients in an unadulterated form,” he says. People do get a lot of misconceptions from reading online health information, such as having a fever and believing that they have five symptoms indicating malaria.

But the Internet still can be helpful as an adjunct to physician advice. “We shouldn’t throw out the baby with the bathwater,” says Kilo. “I find it really simple to re-correct their course.”

Kilo would like to see patients take the attitude that they are engaged in prevention and/or care of a chronic disease. “There’s no reason to be put off by this,” he says. “We want people to ask questions.”

One physician who thinks patients can, and do, go too far with Internet search is Scott Haig, MD, assistant clinical professor, orthopedic surgery, Columbia University College of Physicians and Surgeons, and occasional contributor to Time magazine. Haig penned a controversial commentary in Time in 2007 about “brainsuckers,” a common physician term for patients who spend lots of time researching minutiae about their doctors’ personal lives and waste their doctors’ time with irrelevant, confrontational questions.

“There’s so much information (as well as misinformation) in medicine—and, yes, a lot of it can be Googled—that one major responsibility of an expert is to know what to ignore,” Haig wrote in that article.

Haig says it’s exceedingly easy to get a paper published these days and that pharmaceutical and medical device makers spend big bucks marketing their expensive new products, so there’s a lot of questionable scientific information floating around. For example, he says that some recent medical literature suggests operating on broken clavicles, something Haig has never done in nearly 30 years of practice. “I think it’s malpractice. I think it’s unethical. I think it’s immoral,” Haig says.

But it’s also very profitable. “How do you tell people this?” Haig wonders.

The Harris Interactive poll specifically used the term “cyberchondriacs” to refer to the 32% of US adults who frequently used the Internet to search for information about health and healthcare—up from 22% a year ago. (Sands personally finds the word “pejorative,” noting, “There were people on the lunatic fringe before the Internet.”)

“The quote-unquote empowered patient is usually being empowered by advertising,” says Haig. However, his general impression is that people are getting smarter about separating hype from reality and do have suspicions about some of the things they read online. “The bad news is, no one trusts the trusted sites,” says Haig, who notes that the word “doctor” means “teacher.”

Haig has posted some videos on YouTube with instructions for patients. “I got tired of explaining the exercises I recommend for post-op care,” Haig says. He started providing patients with links to the videos, but he found that almost nobody went to the site.

“The patient empowerment concept has a really nice ring to it,” Haig says, acknowledging that patients can and should be partners with him in their own care. “But when you’re really hurting, you want to talk to someone,” he says.

There has to be a balance between patient activation and assertiveness on one hand and patient trust on the other, according to Epstein. Patients often find information that contradicts or goes beyond what the physician suggests, and people don’t always think clearly when they are sick.

“Even when you think you’re thinking clearly, there may be fear or lapses in judgment,” Epstein says. A good physician should be able to help the patient synthesize and explain all kinds of information without being paternalistic.

“To think of doctor-patient relationships as partnerships… is to use collective wisdom to come to an appropriate path in dealing with pain and suffering,” Epstein explains.

Epstein co-authored a study published in Health Affairs in July, which concluded that primary care physicians must improve their communication skills in order to deliver “patient-centered care.” The increased talk of the patient-centered medical home and the Patient Protection and Affordable Care Act’s focus on primary care heightens this need, according to researchers from Rochester, the University of Toronto, and the American Board of Internal Medicine Foundation.

For example, Epstein says a patient newly diagnosed with colon cancer may think she’d rather be dead than undergo a colostomy. “The doc needs to show that there are other options,” he says.

Saying to a patient, “I’d like you to think with me about all the pros and cons” is one way to approach the situation, according to Epstein. “Patient-centered care is not just giving patients what they want or what they think they want.” It’s about putting the patient’s welfare first in delivering care and medical advice.

“For patients that are a little bit ‘out there,’ I think it’s important that we listen to them, but that we be really clear about what we believe,” Sands concurs. “It’s important that we educate them. We shouldn’t just laugh and turn up our noses at them.”

A paper published in the Archives of Internal Medicine in August found major discrepancies between what physicians believe their hospitalized patients know about their conditions and what patients say they actually learned from their doctors.

Only 18% of patients could correctly recall their doctor’s name, though two-thirds of physicians surveyed at Waterbury Hospital in Connecticut said they thought the patients knew their names. Just 57% of patients knew their diagnoses, while 77% of physicians thought the hospitalized patients did. A whopping 90% of those who received a new medication while in the hospital said they had not been warned about potential side effects.

Less than half of patients said that they had discussed fears and anxieties about treatments with their doctors, though nearly all physicians believed they had such a discussion.

Though the patients in this particular study tended to be older, less educated, and poorer than average, Epstein says physicians everywhere have plenty of room to improve communication skills. He instructs his students to ask open-ended questions. “That’s a habit that physicians don’t always have,” Epstein says. “People start telling you very useful things.”

According to Epstein, patients “can be assertive without being aggressive.”

Indeed, deBronkart does not advocate being pushy with doctors. “I do assert that someone should know what their options are and be able to go after it,” he says.

“Don’t be a jerk to your partner,” the man known as “e-Patient Dave” advises. “It’s not participatory to go in and tell your doctor he is stupid.”

Physicians gradually seem to be warming up to the idea of empowered and engaged patients, according to deBronkart. “I can tell you with certainty that this is shifting,” he says.

And as for his own physician? “It’s much more enjoyable to practice this way,” Sands says.

Neil Versel is an award-winning freelance health IT blogger and journalist. He also writes the FierceHealth IT and FierceEMR newsletters.