Healthcare decisions have traditionally been made with minimal input from patients. However, patients are increasingly encouraged to play a more active role.
It’s a shift that’s been driven by broader access to health information, ethical codes, and laws that have evolved to protect patient rights. There is also a growing body of evidence that patients who are actively involved in their own care have better health outcomes.
The approach that balances patient and physician input is called “shared decision-making,” or SDM for short.
What is shared decision-making?
Shared decision-making involves doctors and patients working together to make decisions that fit with a patient’s personal values and preferences.
Self-education plays a part, but rest assured, shared decision-making doesn’t mean you need to “know everything,” that it's down to you to make the “right” choices, or that you can’t change your mind.
In a recent interview, David Jayne, MD, a clinical nephrologist at Addenbrooke's Hospital, Cambridge, UK, explains that in shared-decision making, "The physician is primarily in an advisory role, providing patients with options."
Your doctor is there to explain what’s going on and help you work through the pros and cons of various options so that you can arrive at the best decision for you, together.
What’s the benefit?
Shared decision-making can be beneficial for all sorts of patients, but it’s particularly helpful in managing chronic illness (like inflammatory and autoimmune conditions), where balancing the pros and cons of various treatments is especially beneficial in making the longer-term outlook feel tolerable. After all, patients who stick to their treatment plans are more likely to have better health outcomes than those who don't.
“Patients who are actively involved experience better health outcomes.”
What’s my role?
Be open
Try to be open and honest about how you’re feeling, share the things you’re worried about and speak up if there’s something you don’t understand. When you speak to your doctor, you may find it helpful to share the information saved in your Journey tracker.
Consider what’s most important
Before your appointments, it can be useful to reflect on what success looks like for you as an individual. What feels like an acceptable balance between your disease symptoms and the side effects of your medication? What might you be prepared to put up with? What would you like to avoid, if possible?
For example, if you’re a new parent, you may want to avoid muscle weakness that would make it difficult for you to carry your child up the stairs. Of course, your doctor can’t make promises about the way your journey will play out, but an awareness of your goals can keep you both on a proactive track.
Seek support
Most people can name one or two people; friends, colleagues, or neighbors, who can offer support. These people can be key to successful shared decision-making, particularly when they attend appointments with you.
Dr Jayne says: "The most important thing is a friend or a partner." This support person can help you remember information, ask questions, and provide emotional support so that you feel more able to take part in decision-making conversations.
Remember, always consult your doctor before making any changes to your medication or lifestyle to ensure the best care for your specific health needs.