When Patients Do Their Own Research

Miscarriage early in pregnancy is very common—roughly one-fifth of detected pregnancies are thought to end in miscarriage, mostly in the first trimester. After a single miscarriage, patients are typically told that no further testing is needed; most women go on to have healthy pregnancies.

But after multiple miscarriages, doctors and patients begin a process of figuring out what is going on. In these situations, a lot of patients will take information gathering into their own hands. They’ll compile ideas from Google, WebMD, chat boards, support groups, friends, and friends of friends. Patients may arrive at their doctor’s office with file folders of information, a cobbled-together idea of their possibilities. Meanwhile, doctors have clinical knowledge, but they may struggle—especially given their limited time—to engage with their patients’ ideas and guide them.

Medicine wasn’t always this sort of shared process. Not long ago, medical decision making was largely left to doctors. Patients were a passive bunch, arriving at the doctor with their concerns and symptoms, and departing with their doctor’s orders. But today patients have incredible access to information online and elsewhere, and this has prompted a shift to what is sometimes called “shared decision making”: patients and doctors, together, sharing the burden of making consequential health choices.

[Emily Oster: Thinking about pregnancy like an economist]

This approach sounds great in principle. Shouldn’t patients be involved in decision making about their own health? In the area of obstetrics, the alternative brings to mind deliveries of the 1950s—white-coated doctors smoking cigarettes in their office while women labor in “twilight sleep,” even, in many cases, strapped to the bed. Surely if women had been involved, they would have opted for something a bit more comfortable.

In practice, though, shared decision making can be a source of frustration and confusion, for both sides. From the patient side, it can feel like doctors are either expecting too much engagement—Isn’t it your job to know what to do?—or not listening and not taking the patient’s ideas and preferences seriously. Sometimes it feels like all of this at once. From the medical side, frustration also comes in several forms—with patients who do not want to engage with the decision, and with those who do but are unwilling to listen to expert advice. Why won’t they listen to me? A patient who arrives with her own research can give the impression that she believes her Google search makes her an expert in medicine.

We, the authors of this article, come at this from both angles—one of us is a doctor, and one of us is an expert in statistics who has made a career of helping millions of pregnant people sort through data to make their own best decisions. We both believe that shared decision making in medicine can work, but many doctor-patient interactions today are not working. In our new book, The Unexpected, we try to provide a road map for improving this interaction, focusing on pregnancy. Our idea is simple. Two things are missing from this conversation: some common knowledge, and a script.

First, patients cannot engage with shared decision making if they do not understand the basics of their condition. To return to the example of miscarriage: A very large share of first-trimester miscarriages are a result of chromosomal abnormalities. If a patient does not know how chromosomes work in conception and what might influence them, discussing miscarriage prevention will be difficult. A patient doesn’t possess a doctor’s understanding of their condition—this would be unrealistic—but acquiring basic knowledge will allow patients to most effectively hear and process what is being said.

In particular, patients may benefit from getting a handle on the fundamental medical terminology associated with whatever symptoms they are presenting. Unfamiliar jargon can spark fear far beyond what one would feel if she knew what was being said. “Antiphospholipid antibody syndrome” sounds terrifying if you don’t know that, for many, it’s a treatable condition. When patients do not understand, many will shut down, unable to ask the questions they have or engage with the choices they need to make.

As a result, before doctors ask people to engage with decisions about their health, they need to prepare them. Our book tries to do this for people facing complicated pregnancy conditions. In other cases—cancer treatment, diabetes, other chronic illnesses—different resources exist. Patients should do some homework before they go to the doctor’s office.

The second thing these conversations need is a script. If patients and their doctor had limitless time to talk, then maybe it would be okay to enter the conversation with only a vague idea of the purpose. But time is limited, and that means a script is key, prioritizing questions where the answers matter for decisions.

To return to the miscarriage example, a script might start with the details of what happened. Knowing exactly when in pregnancy a loss occurred, what kind of testing followed it, and how many times it has happened will shape next steps. A second question is whether there are clues as to why it happened, which will inform whether it will happen again. A script might end by talking about what can be done to decrease risk, if anything.

[Read: When evidence says no, but doctors say yes]

In the best form of this conversation, the doctor brings a deep understanding of what might be going on medically with the patient, the range of possible tests, and what those tests might reveal to the patient. The patient brings a knowledge of their own preferences and their own emotional state. How much information do they want to know? Would they be willing to use more complex medical treatments if they were recommended? Are they even ready to engage emotionally with thinking about trying for pregnancy again?

The central recognition here is that shared decision making isn’t about both sides bringing the same thing to the table and deliberating about it. It’s about two different types of expertise—expertise in medicine on the part of the doctor, and expertise in herself on the part of the patient. Seeing this, in turn, can help the doctors and the patient both recognize when one decision maker should be paramount, or when a decision requires input from both.

An emergency situation—when, say, a person has been in a bike accident, his blood pressure is low, and he is bleeding from his head—isn’t the time for shared decision making. This is when the medical side takes over. No patient needs to be asked whether they think it’s a good idea to scan their head for a skull fracture. At the other end of the spectrum are decisions such as prenatal genetic screening and testing, which are in many cases almost exclusively about patient values and preferences.

Most decisions fall somewhere in between, requiring medical input but with room for patients’ preferences to play a role. Attempting a vaginal birth after a C-section is an example here—both a repeat Cesarean and an attempted vaginal birth have their risks and benefits. The medical expertise comes in explaining these risks and benefits, but the decision for many women here should come down to their own preferences.  

With better understanding, clear scripts, and a sense of when different decision makers should dominate, we believe there is space for some decision making to be truly shared. But one more crucial element should be present: trust. Sometimes the desire by patients to play a role in their medical care can seem like a lack of trust in their doctors. And on the flip side, when patients do not feel like their concerns, ideas, or preferences are being listened to, they can lose trust in their provider to find what is best for them. Good decisions require the trust to recognize that we are all rowing in the same direction, and the willingness to engage so we can get there.