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Shared Decision Making

Writer's picture: Brittany MurrayBrittany Murray

Updated: Jan 13

2024 Autoimmune Community Summit Session Recap


Shared Decision Making is something that I think we all can agree as autoimmune patients is important. We want to feel heard, we want to understand our options, and we want to partner on what the right decision is for us and what the doctor recommends. In this session, Eileen Davidson, also known as ChronicEileen, and Dr. Jennifer Barton, a Rheumatologist at Oregon Health & Science University and the Portland VA, show us just how important shared decision making is from both a patient and clinician perspective. 


They start with defining what shared decision making means to them. According to Eileen, as a patient, shared decision making means having a choice in her treatment plan. According to Dr. Barton, as a clinician, shared decision making means taking the evidence she has and incorporating a discussion and the goals and values of the patient to make a decision together. 


It occurred to me when Dr. Barton defined it that way, that when a clinician asks you what you want to get out of your appointment or your treatment that they are not being factitious, but they truly need to know this information to help make a decision that is right for you. I remember a physical therapist this year asking me what I wanted to get out of my chronic pain PT and I looked at her like she was crazy, I want less pain, duh. But what she needed to know was I want to know what pain I can fix by adjusting my body mechanics and I want to build strength so I can more easily cut my food during a flare. Those answers gave her the information she needed to create a treatment plan that would work for me and help me meet my goals. 


Just like with my PT, the information you share with your physician, where you live, what your lifestyle is like, do you prefer pills or injections, do you travel for work, all of those things go into what treatments your clinician might offer you. In addition their experience with you throughout your care impacts what they offer in the future. For example, they may offer an injection over pills if their experience with you is that you are not good at taking multiple pills a day. Or they may offer pills over an injection because you do not always have access to refrigeration. There are also comorbidities that determine which treatments are appropriate at one time and not an option another time.. Where you are at in life and your lifestyle determines what might be offered to you for treatment and this changes throughout your life, so make sure to keep your clinician up to date on any changes. 


This all sounds fairly easy right, tell your doctor about your lifestyle and what you want and they will develop a personalized treatment plan. Of course it is not always that easy so let’s discuss some barriers to shared decision making. 


At a high level, barriers to shared decision making are centered around communication, knowledge, trust and time. From a clinician perspective, there might be communication challenges due to language, the patient’s health literacy might be low, the patient might not trust their clinician or the clinician might now have enough time in their schedule to develop trust and overcome these communication barriers. From a patient perspective, they might be newly diagnosed filled with emotions like grief, they might be losing trust due to failed treatments in the past, or they might not know what information is reliable. 


Clinician Perspective

Patient Perspective

  • Communication challenges with language

  • Health literacy

  • Lack of trust in their clinician

  • Time available in the schedule

  • Grief of being newly diagnosed

  • Losing trust after failed treatment options

  • Not knowing what information is reliable


So how do we overcome these barriers? Dr. Barton suggests that clinicians recognize these challenges and use plain language, clear communication, have handouts available in multiple languages and to take the extra 2 minutes to use a shared decision making tool. Eileen suggests finding a support community that can help you come to terms with your condition and learn more about your disease and treatment options. AiArthritis, for example, has resources to help you at every part of your patient journey including a community of volunteers who have disease just like yours. Check out their newly diagnosed patient journey here.


Ok so now we know what shared decision making is, how clinicians arrive at decisions, what the barriers are and how to overcome those barriers. So let’s talk about how to prepare for your next appointment. Dr. Barton suggests reflecting on what is the most important thing to you that day, what do you want to get out of your appointment. Write down specific questions that you have for your clinician, they could be about side effects, treatment options, upcoming travel or anything else on your mind. It can also be helpful to bring someone else with you to your appointment when you can. They can help you hear what the clinician is saying and provide you with another voice. AiArthritis has an appointment plan communication aid that can help you prepare for your next appointment and I have a variety of health trackers that you can use to keep track of your symptoms and practice self-management, 


Something else to consider for your next appointment is that there are other ways to get help and support outside of your physicians and medications. Mental health support, diet changes, occupational therapy and physical therapy are also important to your overall health plan. Ask your doctor what else you can do outside of medications to improve your health. Can I change my diet? Would physical therapy help? What about working on my mental health, reducing my anxiety or depression? If the clinician does not suggest these options to you or does not offer them the first time you ask, ask again. As your disease progresses or your treatments or symptoms change, these resources might become more important or more relevant. 


You might be ready to have shared decision making conversations with your clinician, you know what you want and you have your appointment plan but what do you do if your physician is not receptive or is not listening to you. It is imperative that you have a clinician that hears you, wants to collaborate with you and respects your experience. If you have the option, find another clinician. Not everyone has that option and leaving does not have to be your first choice. You can also try setting expectations with your clinician. Let them know what you need, what you are not getting from them and how you are feeling. They may not realize that they are not meeting your needs and sharing this information can help you make the connection and build the relationship you need to start making shared decisions.  


This was a great session that offered a lot of great tips on shared decision making. Here are the key takeaways:

  • Shared decision making requires engagement from both the patient and the clinician

  • Prepare for your appointment, know why you are there and what you need

  • Talk to other patients about what they have experienced and what questions they have asked their clinicians

  • Find a doctor that will listen or set expectations with your clinician so they listen

  • Do your research, learn about your disease, the treatment options and alternative resources that can help you

  • Most importantly, advocate for yourself



Recordings from the 2024 Autoimmune Community Summit are available on YouTube.


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