When you’re living with an autoimmune disease-whether it’s rheumatoid arthritis, multiple sclerosis, lupus, or Crohn’s-you’re not just dealing with symptoms. You’re weighing daily choices that can change your life: Will you take a drug that cuts flare-ups by 60% but raises your risk of a rare brain infection? Can you afford the time and cost of weekly injections if you work two jobs? These aren’t just medical questions. They’re personal ones. And that’s why shared decision-making isn’t just a buzzword-it’s the difference between sticking with treatment and quitting it altogether.
What Shared Decision-Making Really Means
Shared decision-making (SDM) is when you and your doctor sit down, talk honestly, and pick a treatment path together. It’s not your doctor telling you what to do. It’s not you deciding alone after reading a scary blog post. It’s both of you using clear facts, your values, and your real-life situation to make a choice. This approach became official in rheumatology around 2012, when the American College of Rheumatology said it should be standard practice. Since then, studies have shown it works. In one study of over 3,200 people with autoimmune diseases, those who took part in shared decision-making were 82% more likely to stick with their treatment. That’s 19 percentage points higher than people who weren’t involved in the decision. Why does this matter? Because autoimmune treatments often come with serious trade-offs. For example, natalizumab, a drug used for multiple sclerosis, can cut relapses by up to 70%. But it also carries a 1 in 1,000 risk of PML-a rare, deadly brain infection. If your doctor just says, “This drug works well,” without explaining that number, you might not realize how risky it is. But if they show you: “Out of 1,000 people like you, one might get PML over two years,” you can decide if that’s a risk you’re willing to take.The Tools That Make It Work
You don’t need to be a doctor to understand these choices. That’s where decision aids come in. These aren’t fancy apps or jargon-filled brochures. They’re simple, visual tools made by hospitals and patient groups that show you exact numbers. For example, the Arthritis Foundation’s decision aid for rheumatoid arthritis shows you:- Methotrexate: 50% chance of 20% improvement in symptoms
- Adalimumab (a biologic): 60% chance of same improvement
- Serious infection risk: 1.2 cases per 100 patients per year with methotrexate, 1.8 with adalimumab
How It Plays Out in Real Life
Imagine two patients with rheumatoid arthritis. Both are 45. Both have moderate joint pain. Both are candidates for a biologic. Patient A gets the old-school approach: “We’ll start you on adalimumab. It’s effective. You’ll get an injection every two weeks.” No discussion. No numbers. Just a script. Patient B gets SDM. Their rheumatologist says: “Here are your options. Methotrexate is cheaper and taken daily. It works for about half of people. Biologics like adalimumab work better but cost more and raise your infection risk. You’re a nurse-you’re around sick people every day. That matters. What’s more important to you: avoiding pain, or avoiding infections?” Patient B chooses methotrexate. Two years later, they’re still on it. No infections. No hospital visits. They didn’t get the “best” drug by clinical standards-but they got the right one for them.
Where It Falls Short
SDM isn’t magic. It doesn’t work if you’re in crisis. During a severe flare-when your joints are swollen, your vision is blurry, or your bowels are bleeding-there’s no time for a 10-minute chat. Doctors have to act fast. A 2020 study found nearly half of rheumatologists say shared decision-making is impossible during acute flares. It also doesn’t work if you’re rushed. A 2020 survey by the National MS Society found 63% of patients felt their doctors skipped the conversation entirely. One woman said: “My neurologist listed three MS drugs in 90 seconds. No talk about how they’d fit into my nursing schedule. I left confused and scared.” Time is the biggest barrier. A typical rheumatology visit is 15 minutes. SDM needs 9 to 14 of those minutes just to cover the basics. Most providers can’t do it without help. That’s why pre-visit tools matter. If you fill out a short online questionnaire before your appointment-answering questions like “How much do you worry about side effects?” or “Can you handle weekly injections?”-your doctor gets a summary. The visit becomes faster. More focused. More meaningful.Why Some Patients Still Feel Left Out
Even when SDM is offered, it’s not always done right. One big problem? Risk numbers are often presented in relative terms: “This drug reduces relapses by 50%!” That sounds great-until you realize it means going from 2 relapses a year to 1. Not zero. Not cured. Just half. Dr. John White from Optum Inc. warns that providers must use absolute numbers: “Tell them it’s 1 in 1,000, not 0.1%.” People understand “one in a thousand” better than “point one percent.” Another issue? Health literacy. A 2022 study found patients over 65 or with low health literacy got 37% less benefit from digital decision aids. If you’re not comfortable using a tablet or reading medical terms, an app won’t help. That’s why clinics that pair digital tools with a nurse or peer counselor see better results.
What’s Changing Now
The field is evolving. In March 2023, the FDA approved the first AI-powered decision tool for rheumatoid arthritis called ArthritisIQ. It pulls data from your EHR, your symptom logs, and your lifestyle answers to generate a personalized risk-benefit report. It’s not replacing your doctor-it’s giving them better info to talk with you. The MS Association of America launched a tool called “MS Values Compass” in February 2023. It asks you to rank what matters most: “Can I travel?” “Will I still be able to work?” “How much do I fear side effects?” Then it matches your answers to treatment options. Insurance is catching up too. Medicare now ties 9% of payments to patient experience scores-and SDM is a big part of that. The European League Against Rheumatism now requires documentation of shared decision-making before starting biologics. In Europe, that’s led to 22% more appropriate prescriptions.What You Can Do Today
You don’t have to wait for your doctor to bring it up. Here’s how to start:- Ask: “What are my options besides the one you’re suggesting?”
- Ask: “Can you show me the actual numbers? Not ‘it works well’-how well? What’s the real risk?”
- Ask: “How would this affect my daily life? My job? My family?”
- Use free tools: Go to arthritis.org, nationalmssociety.org, or ohioresearch.org and search for “decision aids.” Download one before your next visit.
- Bring it up: “I read this tool. It helped me understand the trade-offs. Can we look at it together?”
Why This Matters Long-Term
Autoimmune diseases last decades. You’re not choosing a treatment for today. You’re choosing a lifestyle for years. A drug that works perfectly on paper might make you quit because it ruins your sleep, your job, or your ability to travel. SDM keeps you in the game-not just because it’s science, but because it’s respect. The data is clear: When patients are truly involved, they stay on treatment longer, spend less on healthcare, and report higher satisfaction. That’s not just good medicine. It’s good life.Is shared decision-making only for people with rheumatoid arthritis?
No. Shared decision-making applies to all autoimmune conditions, including multiple sclerosis, lupus, psoriatic arthritis, Crohn’s disease, and type 1 diabetes. The American Academy of Neurology recommends it for every disease-modifying therapy decision in MS. The Arthritis Foundation provides decision aids for RA, PsA, and lupus. The core principle-balancing clinical evidence with personal values-works the same no matter the disease.
Do I need special tools to participate in shared decision-making?
No, but they help a lot. You can start just by asking questions: “What are my options?” “What are the real risks?” “How will this affect my daily life?” But if you use a decision aid-like those from the Arthritis Foundation or National MS Society-you’ll understand your choices better. These tools use plain language and visuals to show exact numbers, not vague promises.
Can I still make my own decision if my doctor pushes a specific treatment?
Yes. Shared decision-making doesn’t mean your doctor decides. It means you both discuss, and you choose. If your doctor says, “This is the best option,” ask: “What makes it the best for me?” If they dismiss your concerns, it’s okay to ask for time to think, get a second opinion, or bring in a decision aid. Your values matter as much as the data.
Why do some doctors avoid shared decision-making?
Time is the biggest reason. A 15-minute visit isn’t enough to explain complex trade-offs. Many providers also lack training. Only 22% of rheumatologists consistently use decision aids, even though 89% say they’re valuable. Some fear patients will choose less effective options. But studies show patients who understand risks make choices that match their lives-and stick with them longer.
How do I know if my doctor is practicing shared decision-making?
They’ll ask you questions like: “What matters most to you?” “What are your biggest worries?” “How do you feel about injections vs. pills?” They’ll show you numbers-not just say “it works.” They’ll pause to check your understanding: “Can you tell me back what we just discussed?” If they rush, skip options, or don’t ask about your lifestyle, they’re not fully practicing SDM.
If you’re living with an autoimmune disease, you’re not just a patient. You’re the expert on your own life. Shared decision-making gives you the tools-and the right-to use that expertise. It’s not about being perfect. It’s about being heard.