We wanted to explore some questions about the role of the Internet in people’s health care practices and management. For example, how does Internet use fit into people’s current habits and patterns of health care?
We found a correlation between visits to health care providers and researching health issues on the Internet. People who visit a doctor or clinic are more likely to have gone online for health information, and vice versa.
In our survey, we found that eight in ten Internet users saw a medical professional in the past 12 months (80%). Of those, 84% have searched online for health information. Of the other 20% of Internet users who didn’t see a medical professional in the last 12 months, significantly fewer, 66% have ever searched for health information. This suggests that when people are sick or have health issues rise to the fore, they turn to both their traditional practice of visiting a health care provider and the newer resource of searching the Internet for health information.
Our findings echo a study conducted for the American Academy of Dermatology which found that 67% of patients preferred to go online to research a medical procedure, yet 70% of patients also said that their physician’s advice is the ultimate decision-making factor. E-patients are, for the most part, supplementing their doctor’s counsel with information gathered from family, friends, medical journals, and the Internet.
We saw two themes emerge from our e-patient surveys: First, people use the Internet to inform themselves about their relevant health care issues and then carry that information to their health care providers. And second, when they carry this information to doctors, they are met with mixed reviews from the doctors.
One respondent related the benefits of her online searches: “Our first visit to the neurologist, when my son was diagnosed with autism was not as devastating as it could have been. My husband and I were well informed and had already figured out the diagnosis by the time we saw the doctor. By being better informed, that first visit was very informative and constructive because we knew the background information, weren't in denial and could discuss therapies and tests in a logical way with the doctor.”
Another e-patient summarized, “Knowledge is power. It also helps me to feel prepared to talk with doctors and nurses. I know the terminology and the options.”
For the most part, respondents report that their use of the Internet makes them feel more independent of their doctors, empowers them to ask more informed questions during appointments, and allows them to have less fear of the unknown because of what they learn during their online health research. But their new-found health information from the Internet affects doctor-patient dynamics in a variety of ways. These may be best summarized by one man who wrote in our survey that he had encountered two attitudes: doctors who said they were “partners in my care” vs. those who sent the message “him chief, me Indian.” Some respondents reported going online to test a doctor’s knowledge or to fact check a diagnosis and were pleased to find that their care was indeed excellent, just rushed.
“Every time I visited with the neurosurgeons,” wrote one respondent, “I was well equipped with an incredible amount of information retrieved from countless hours of scanning sources on the Internet. Many times, they became irritated with me for having knowledge of the condition beyond what they chose to share with me. Many times they became defensive and short with me when I would question different aspects of either the information they were giving me, or what I had found out on my own on the Internet.”
Another respondent, after encountering a doubtful doctor, went online to gather testimony from fellow support group members and “was able to let my doctor know that I was not the only one with the odd symptoms I was having.”
E-patients who have encountered negative attitudes from medical professionals either abandon those doctors or keep quiet about their online research. But many echo the sentiment of one respondent who happens to work in a medical facility. This person wrote, “Countless days, weeks, months of suffering are happening to so many patients because doctors refuse to learn new things from the Internet.” Indeed, one defiant health seeker wrote, “Never again will I accept loopy advice such as, ‘There’s no reason for you to be having trouble walking, so it’s not happening.’”
It is not always the case, though, that physicians resist information brought to them by patients after online searches. We did not include physicians in our survey, but in a study of oncologists led by Dr. Paul Helft of the University of Indiana, researchers found that when a patient brings online health information to an appointment, the doctor spends about 10 extra minutes discussing it with them. Oncologists also reported that use of the Internet had the ability to simultaneously make patients more hopeful, confused, anxious, and knowledgeable.
Other e-patients may visit the doctor as infrequently as possible because they do not have health insurance. According to the Census Bureau, 14.6% of Americans (about 41 million, including 8.5 million children) do not have health insurance. Yet they get sick or have health questions, too. As one respondent to our online survey wrote, “I live in a remote rural area — 150 miles from my doctor. I do not have health insurance so I try to make any time spent with my doctor more helpful. If I can rule out or treat issues myself, I can help my physician give me the best health care for the dollar.”
As noted above, a small but enthusiastic number of respondents praise an emerging feature the Internet offers for doctor-patient relations: email correspondence. Only 7% of respondents say they have exchanged email with their doctors, but almost all of these emailers say their electronic correspondence with their doctor has been useful to them in their health care.
Email correspondence between patients and doctors is very efficient in a number of ways:
- Email spans geographic distance. It helps shorten the miles between doctors and patients: patients are sometimes separated from their doctors, particularly specialists, by great distances. One respondent wrote, “The neurologist I most respect and trust practices about 1500 miles from where I live…but when I have questions about therapy or have an important medical decision to make, I discuss it with him via e-mail.”
- Email facilitates ongoing, non-urgent communication. Email takes real-time constraints out of non-critical doctor-patient communications. Wrote one: “My local doc wants me to email him with updates on how a new treatment is working or with questions. I find this to be a convenient way to communicate. We don’t end up playing phone tag; I don’t have to keep calling back, wondering if he ever got the first message. Usually, I get a response within a day or so.” Another echoed, “My neurologist invites his patients to communicate with him via email. I do this when I have the need and he responds within the day or hour, depending on severity of situation.”
- Email can remove the adversarial nature of some discussions. Email can help patients vault over the lines of defense that are often set up between patient and doctor, offering clarity in many situations. One respondent described a typical and clumsy process that email could streamline, “We call and leave information with the nurse/receptionist saying A; she goes to the doctor and says B; she calls us back and gives doctor’s reply to B or sometimes even C! …but I need an answer to A. Usually, there is at least another phone call before the doctor calls me back to find out what the problem really is.”
In past Pew Internet Project research, we have seen the value of email as an easy way to make arrangements, appointments, and plans for both personal and professional life. Similarly here, email simplifies the housekeeping details of appointments, prescriptions, and basic questions, especially for patients with complicated cases. One patient living with a chronic disease described using email for “specific appointments and specific advice for clarification, for obtaining duplicate prescriptions, for advance arrangements for personal care during holidays.”
Email helps simplify the housekeeping details of patient-doctor relations.
Amplifying email’s secretarial benefits, many patients with complex medical situations have adapted email to be a kind of open diary or journal from the patient to the doctor. One summarized this matter-of-factly, “My medical oncologist and I communicate via email concerning questions and treatment progress between appointments.” Elaborated another, “I usually update diary highlights for my doctor so that the limited time he is available for consultation will be more meaningful. He, in turn, responds to the emails and often exchanges info to accomplish the same end.”
In addition, both doctors and patients recognize that intense and fast-paced in-person appointments sometimes mean questions are forgotten, answers are mis-remembered. Email serves as a good record-keeper. One respondent wishes she could correspond with doctors by email, “I could comprehensively communicate all of my questions and concerns without feeling rushed.”
But email does have limitations. It lacks the in-person assessment and nonverbal clues of an office visit, like a doctor’s reassuring smile or a patient’s raised eyebrows. In some of our past studies on email’s place in interpersonal relations and in the workplace, we have seen that some people shy away from using email to discuss sticky or sensitive issues. Patient evidence here suggests that people avoid email for the complex and intricate medical discussions, too. One wrote, “Since my surgeon is out of state, I keep him posted on my progress via email in between visits. Of course, he never gives out medical advice over email. Only in person or over the phone. Email is strictly for progress reports so he can stay in the loop of my recovery!”
While many respondents longed for email contact with their doctors (“I only WISH!” was a frequent, resounding sentiment), a number of others echoed some of the worries we hear with any Internet or email use: Some e-patients fret using the Internet for personal or private issues. Wrote one Parkinson’s disease patient, “Not an option for me. I don’t believe that a doctor or health professional can adequately answer an online question. Only doctors and health professionals who can visually assess my person can adequately answer my health questions.” And another, warning that email should play a very limited role, wrote, “I think the Internet is great for information but cannot replace the medical community. Nothing is worth the human relationship with a caregiver.”
The medical establishment is beginning to recognize both the potential benefits and pitfalls of using email communications in health care. The few doctors and clinics that are using email already recognize that email communications represent more than a shift in a technology; establishing email use can entail wholesale change in office attitudes and practices, not to mention a serious look at medical and legal ramifications. Those who use email suggest guidelines for a good working system of email, one that requires patients and doctors share common expectations and observe common protocols. For starters, both parties need to agree on —
- the content of emails — what is appropriate to consult about over email
- how to format emails — be clear, use proper identification
- outline turn-around times and expected record-keeping
- privacy and security concerns — who in the doctor’s office can read the emails and respond to them
- compensation — when should doctors charge for online consultations, are they covered by insurance
And the doctors themselves are concerned about the shift in medical and legal, administrative and technological procedures. What is the role of email correspondence in diagnoses; what are the implications of email correspondence in malpractice suits; where do emails fit into patient files; what if emails go astray or end up in the wrong hands?