Like a stereotypical researcher, I don’t always intuitively “get” people. I need to think through what they’ll want, often using analogies and for a long time, before I’m ready to talk to them.
Or I could just become an expert on asking people to do one thing, and think it through professionally. Because I have to think it through and write about it first, educating people on my studies (and sometimes the clinical procedures they’re based on) depends on a process I think of as “doing empathy”.
One of the most fraught parts of guiding a patient or family through informed consent is helping them understand how and why research is not care. This becomes especially complicated when there is overlap between the clinical setting and the research: the people, place, procedure, or even just the type and tone of the interaction can all be the same as for the patient’s care.
In my work, I frequently ask children and young adults to spend longer on a medical procedure than they otherwise would: most of the time they will be patients having a test their doctor ordered. For the last five to fifteen minutes, they will be a volunteer. Those last few minutes might benefit them, but they benefit me, too. And kids don’t have to go through with it, even if their parents want them to.
One of the most important things to parents and kids in this situation is what will change: how will their day at the hospital be different from the day they had planned? Will they see, hear, or feel anything different from the test they expect? Will they know when they are having the test their doctor wants, and when they switch to being a volunteer with the option to stop? Will they receive drugs, undergo interventions, or face risks that they wouldn’t otherwise?
Being prepared for those questions, and answering them in a way that satisfies patients and families, requires that we imagine the test from the patient’s perspective. If you try to give a complete answer, you may even find that the responsible person doesn’t yet know everything about the procedure, what they will experience, or what the next step is. A young person might need to be told what an MRI or a blood draw will be like, for example, before they can know if they’re willing to do extra. If a child is being told that they have the option to stop, they might need examples of non-scary reasons they would want that, like feeling tired or needing to use the bathroom.
Because we need to know how research is different from clinical care, researchers can be very effective at setting patient expectations for clinical procedures as well. Offering this type of education is a great opportunity to do empathy and act thoughtfully on our ethical commitments in all areas of our practice. By offering to discuss other aspects of a procedure with patients, even if they never become subjects, we demonstrate that our concern does not hinge on their participation and make it safe for people to say no to us. By doing empathy with all families, we have the opportunity to support clinical care by reinforcing patient trust in the physicians who referred them.