By the time I went for a mammogram, I had ignored several recommendations to get screened. For years, I explained to concerned friends that I was simply following the suggestion laid out by the U.S. Preventative Services Task Force for women with no family history of breast cancer. I was more than comfortable waiting until I turned 50 to start screening. My physician, on the other hand, wasn’t and regularly sent me home from routine exams with referral slips. (Our debate mirrored the larger national controversy over changes to the guidelines.) I kept resisting until the day we discovered a mysterious thrombosis under my right armpit. In order to know why I had a blood clot, I had to agree to all recommended tests—including a mammogram.
My results revealed two small lumps in my right breast.
As anyone who’s had an abnormal mammogram can tell you, there’s nothing worse than sitting in a radiology waiting room, biding time. While I waited in my thin, blue paper gown, I started searching on my smartphone for any relevant medical information. I was busy feverishly bookmarking pages explaining the different types of breast masses when the radiologist finally called me into her office. By that time, I was already armed with more questions than she could possibly answer.
The advent of the digital age has meant more and faster access to information. In the 21st century, we’re able to overload on information simply by typing symptoms into Google’s search bar. The problem is getting access to accurate information. In the deluge of digitized health information, how can we sort out the good from the irrelevant and the bad?
I’m not your typical patient. I’m a medical anthropologist, which means I’m trained to critically examine the practice of medicine. In other words, I am a doctor’s worst nightmare. I am exactly the type of patient that thinks she knows almost as much about her condition as her physician, simply because I’ve done diligent research. Even though I’m not a physician, I think I deserve an equal say in decisions about my care. And I’m not alone.
More and more of us are literally taking responsibility for our lives (or, in the case of measles and the choice to vaccinate, the lives of those around us) into our hands. Research has shown that online access to information often leads to an increase in a patient’s desire to have a more active role in decision-making. We’re doing more online research and it’s influencing our decisions, even when we don’t talk about it with our doctors. Since we all have access to more information than we know what to do with, confusion about health-related information can and should be better integrated into consultations during office visits.
What’s missing from online medical sites isn’t just good information; it’s all the context and expertise needed to interpret it. Because we are increasingly well-educated and tech savvy, we have access to much of the same information that doctors do. In the age of WebMD, it’s easy to see why we increasingly view ourselves—and have started to behave—more like doctors-in-training than traditional patients. And this isn’t necessarily a bad thing. Patients with more information about their conditions and treatment options are ultimately more proactive and better patients—but only if they have the right information and only if they use it to engage in a productive dialogue with their doctors.
In my case, the radiologist sent me home with an initial diagnosis of “benign masses.” She told me she was 99 percent certain that one of the lumps in my breast was nothing more than a common cyst. The other, she said, was most likely a small, benign growth. She recommended a follow-up mammogram and ultrasound. The lumps would change or grow or they wouldn’t; either way, we’d get more definitive answers in six months. I went home and dove into a sea of medical research.
In the week following my scan, I gathered information on common types of breast abnormalities, risk factors, and how much early detection really affects treatment outcomes. I also researched biopsies for breast cancer and the incidence of false positives. When I was finished, I had compiled an enormous heap of statistics and downloaded PDFs.
Numbers look very different when they’re personal. Even if I know the risk for a woman with benign breast disease developing cancer is 16 percent, I’m going to think about those odds very differently when it’s about me than when it’s about a total stranger. It’s hard to make personal care decisions based on online information alone. Even so, I knew I didn’t want a biopsy and I didn’t want to see a specialist. I wanted to wait it out and get rescreened in six months.
My doctor disagreed with my plan. I brought up the research I’d done and we discussed it. Eventually, she accepted my choice to wait. Everything turned out fine; I don’t have breast cancer. But I’ve often wondered whether I would have fought as hard against my doctor’s initial advice if I weren’t a medical anthropologist or if I hadn’t felt as confident in my ability to interpret the information I’d gathered. Would she have listened to me if I didn’t have a Ph.D.? Would I have been talked into an unnecessary—and expensive—procedure and experienced more pain and anxiety if I hadn’t done any research?
The uncertainty and confusion around online information and medical decision-making stem at least in part from the sheer amount of information that’s available. Researchers at McMaster University have found that patients don’t necessarily need more information, which can often overwhelm us. What we need is more easily accessible and simplified information that can jump start conversations with our doctors. The use of an electronic tablet preloaded with specific information would allow patients to ask better questions, helping to create a dialogue with physicians. This, in turn, leads to enhanced decision-making and better care.
But until those tablets get out of beta testing, and even if they become ubiquitous, patients will probably still keep searching for health-related information online. And that’s where Google steps in. A few weeks ago, the search giant announced a partnership with the Mayo Clinic—part of Google’s overall effort to harness the power of its algorithms to support better health care. In the near future, Google search results for medical terms or symptoms will produce a sidebar with illustrations and information vetted by physicians. The hope is that patients will soon have an easier time finding trusted information—that they can then bring in to their doctor’s office to start healthier discussions.
The moral of this story is that online medical information can and will lead to better care, but only if patients bring in what they find and doctors react well to it when they do. My doctor took the time to discuss the information I’d found and we made a decision together. I was confident that she understood and respected my desires—and that made me feel safer and more in control of my own care. A study of cancer patients showed higher patient satisfaction with care when physicians reacted positively and took the information their patients found online seriously, taking the time to discuss it with them. I know that, in my case at least, this approach helped to foster a better working relationship between my doctor and me.
This article is part of Future Tense, a collaboration among Arizona State University, New America, and Slate. Future Tense explores the ways emerging technologies affect society, policy, and culture. To read more, visit the Future Tense blog and the Future Tense home page. You can also follow us on Twitter.