Box 1: Interview of Mrs C., a French patient advocate and patient teacher
Why are patients reluctant to follow a pharmacological treatment plan?
Mrs C.: “When speaking about nonadherence to a pharmacological treatment, we often think of the fear of adverse effects, skepticism toward therapeutic efficacy, and the fear of addiction. These are not the only issues; for example, taking a medicine also reminds you of your illness daily, which can prevent you from living normally. Patients stop taking the treatment as they feel better.”
What is the priority for patients to adhere to treatment?
Mrs C.: “SDM is one of the priority solutions allowing patients to adhere to treatments. Both the patient and the doctor get involved in decision making and negotiate for the best option. We negotiate all the time; why not with our doctor? When the doctor and the patient make a mutual agreement, the patient is more engaged. The SDM process holds clear benefits for patients who become an actor in their own treatment; they decide together and are more committed. There are also benefits for the doctor who can better know the patients and engage in a true partnership based on communication; it’s a win–win relationship. Of course, there will probably be a longer consultation time to achieve agreement between the two parties, but this is worth it.”
Do patients want to be more involved?
Mrs C.: “All patients want to be involved. Doctors often inform patients of the benefits, the risks, the therapeutic options, … and the clinician’s view prevails at the end. In the SDM process, information and decisions are shared. The difficulty for the doctor is to give the therapeutic options while remaining neutral regarding the choice. Hopefully, there are now clear, precise, and neutral tools to help in generating a mutually agreed decision.”
Are patients sufficiently informed about therapeutic options and related side effects?
Mrs C.: “Unfortunately, they are not. By knowing the options and related side effects, the patient has the choice. For example, a woman may be reluctant to gain weight but prefer to be a bit “tired” in the morning, whereas a man may prefer the opposite option. Some doctors can be reluctant to provide an exhaustive list of the side effects, but patients can easily have access to this information with the many internet forums and blogs available. In fact, the doctor is the most legitimate person to give a complete picture of the side effects, to give details on the existing solutions, and to clearly explain the benefit–risk balance that most of the patients ignore.
The expertise of the patient must be taken into account. It is important for patients to talk about their beliefs, preferences, values, and needs. Chronic patients are experienced. They often follow forums on the internet, they learn a lot about their disease and share their experience; it’s a collective intelligence. The patient becomes an expert in “living with”; it is important not to underestimate this expertise.”
What steps forward do you suggest?
Mrs C.: “First, training in SDM should be obligatory for all doctors; second, patients and the general public should receive more information about SDM.”