Betty Hsiao, MD, assistant professor of medicine (rheumatology, allergy & immunology), is interested in investigating how patients share their viewpoints and goals of care with their doctors to accomplish shared medical decision-making. Below, she discusses her research and the importance of giving patients the opportunity to play a role in medical decisions.
What is shared decision-making in medicine?
Shared decision-making in medicine is when a physician helps a patient make informed decisions by presenting in-depth information—including risks and benefits—usually when discussing a medication or treatment. Shared decision-making takes into consideration a patient’s preferences and values in choosing the best treatment option.
How did you first become interested in studying shared decision-making in medicine?
I became interested in shared decision-making during my training in rheumatology. Beyond initial treatment recommendations, guidelines aren’t always clear as to what the next best steps are for patients with rheumatoid arthritis (RA). In these cases, patient preferences play a big role in making medical decisions. It’s important for physicians to understand a patients’ priorities when thinking about treatment options because patients may not always agree with what a clinician recommends.
In rheumatology, patients are living and dealing with a chronic condition, and they may go through several treatments before finding one that works for them, so there is a component of uncertainty. Rheumatologists take care of patients longitudinally—we start taking care of patients from when they are first diagnosed through the evolution of their disease. We see the breadth of their illness. So, taking into account patients’ values at different stages of their disease is also important because their circumstances and thus values may change during the different points of their lives. It’s important to acknowledge how patients are at different stages of their disease and their life.
Why is it important for physicians and patients to work together to make decisions?
When patients are given the opportunity to take part in medical decisions, there is more active participation and promotion of patient autonomy. When patients play a role in the decision-making, they are more likely to become active proponents in their medical care, advocate for themselves, and increase their knowledge about ways to treat and manage their condition.
Has there been anything in your research that surprised you?
In one of our projects, we interviewed both rheumatologists and patients to learn how they approach and view treatment decisions in RA. We found that rheumatologists focused on assessing disease activity and usually recommended escalation or additional medications if patients had moderate or high disease activity. This decision is usually considered to be relatively straightforward.
But when we interviewed RA patients to better understand how they viewed treatment decisions, there was a stark contrast. Where rheumatologists focused on measuring disease activity and escalating treatment if patients had active disease, patients talked about the impact of their disease and the importance of feeling informed. Patients also spoke about the importance of hearing from their peers who are going through the same thing and made similar decisions. For example, when considering a new medication, patients wanted to learn about the experiences of other patients who had taken that same medication. Patients also talked about seeking additional information beyond what was provided at their office visit. This project showed there is a gap between the information rheumatologists are providing and the information patients need to make decisions about their treatment.
What are the next steps in your research?
We aim to better meet patients’ needs by providing the additional information they are seeking. Recently we filmed videos of patients living with RA talking about their treatment decisions, and we’re investigating the impact of those videos on other patients with RA. Our research shows the importance of shared decision-making, and we hope to make it a more common and natural process.