Shared Decision-Making in Autoimmune Care: How Patients and Doctors Choose Treatments Together

When you’re diagnosed with an autoimmune disease like rheumatoid arthritis, multiple sclerosis, or lupus, the next question isn’t just what treatment to take-it’s which treatment fits your life. One pill a day? Daily injections? Monthly infusions? Each option comes with trade-offs: better symptom control versus higher risk of infection, fewer flares versus the chance of a rare but serious side effect. This is where shared decision-making (SDM) isn’t just nice to have-it’s essential.

What Shared Decision-Making Really Means

Shared decision-making isn’t just the doctor giving you a list of options and saying, "What do you want?" It’s a structured conversation where both you and your provider work together to pick the best path forward. You bring your values, lifestyle, fears, and goals. Your provider brings the science-what the data says about how well each treatment works and what risks come with it.

This approach became standard care for chronic conditions like autoimmune diseases because traditional models failed. In the old system, doctors decided. In the newer "informative" model, doctors list options and leave you alone to choose. But neither works well when the stakes are high. A 2017 study of over 3,200 people with autoimmune conditions found that those who took part in true shared decision-making were 82% likely to stick with their treatment. Those who didn’t? Only 63%.

Why the big difference? Because when you understand the real numbers-and feel heard-you’re more likely to follow through. If you’re a nurse working night shifts, a daily injection might be impossible. If you’re planning a pregnancy, some biologics are off the table. If you’re terrified of needles, an oral drug might be the only option that keeps you compliant. SDM makes space for those realities.

The Tools That Make It Work

Good shared decision-making doesn’t happen by accident. It needs tools. One of the most common is a decision aid. These aren’t just brochures. They’re evidence-based tools-sometimes videos, apps, or printed booklets-that break down treatment choices with clear numbers.

For example, a decision aid for rheumatoid arthritis might say: "With adalimumab, 60 out of 100 people see at least a 20% improvement in symptoms. With methotrexate alone, it’s 50 out of 100. But with adalimumab, you have a 1.8% chance per year of a serious infection. With methotrexate, it’s 1.2%." That’s not vague. That’s concrete. And it’s exactly what patients say they need.

The Ottawa Hospital Research Institute developed decision aids for biologics in RA, psoriatic arthritis, and lupus. The Arthritis Foundation has free versions too. These tools use absolute risk-not relative percentages-because "50% lower risk" sounds better than it is. If the baseline risk is 1 in 1,000, cutting it in half still means 1 in 2,000. People need to see the real numbers to make sense of it.

For multiple sclerosis, the University of Michigan’s "MS Decisions" tool shows PML risk as "1 in 1,000 over two years" instead of "0.1%"-and patients rate it 4.6 out of 5. Why? Because it matches how people think. We don’t process decimals well. We understand "one in a thousand."

How the Conversation Actually Goes

A real shared decision-making visit doesn’t take an hour. It takes about 9 to 14 minutes-broken into three parts.

1. Team Talk (1-2 minutes): "I want to make sure we’re on the same page. What matters most to you about your treatment?"
2. Option Talk (5-7 minutes): "Here are your options. Here’s what the data says about how well each works, and what side effects you might face. Let me show you the numbers."
3. Decision Talk (3-5 minutes): "Which option feels right for you? What concerns do you still have?"

This structure is backed by research in the Annals of Internal Medicine. But most doctors don’t use it. A 2021 survey found that 78% of providers say they don’t have enough time. And only 22% consistently use decision aids-even though 89% say they believe in them.

The fix? Pre-visit tools. Some clinics send patients a short digital survey before the appointment: "What’s your biggest worry about treatment? How do you feel about injections? What’s your biggest goal right now?" That cuts the discussion time by over 3 minutes per visit. It also helps the doctor come in prepared.

When Shared Decision-Making Falls Short

It’s not perfect. And patients know it.

A 2020 survey by the National MS Society found that 63% of patients felt rushed during treatment discussions. One woman said, "My neurologist listed three MS drugs in 90 seconds with no discussion of how they’d fit my nursing schedule." That’s not shared decision-making. That’s information dumping.

Another problem? Health literacy. A 2022 study in the Journal of Autoimmunity found that patients over 65 and those with lower health literacy got 37% less benefit from digital decision aids-unless they had someone to walk them through it. That’s why clinics that pair digital tools with a nurse or patient navigator see much better results.

And then there’s the issue of timing. During a severe flare-when a patient’s joints are swollen, or their vision is blurring-there’s no time for a 10-minute discussion. A 2020 study showed 47% of rheumatologists say SDM is impractical during acute flares. That’s okay. SDM isn’t meant for emergencies. It’s meant for planning the long road ahead.

Why It Matters More in Autoimmune Diseases

Autoimmune treatments are uniquely tricky. They don’t just treat symptoms-they change how your immune system works. That means they can help you walk again… or leave you vulnerable to infections that could kill you.

Take natalizumab for MS. It cuts relapses by up to 70%. But it carries a risk of PML-a rare brain infection. The FDA says it happens in about 1 out of every 1,000 patients treated. That’s low. But if you’re that one person, it’s everything.

Or consider TNF inhibitors for rheumatoid arthritis. They’re great for stopping joint damage. But they raise your risk of tuberculosis, fungal infections, and even certain cancers. The difference between a 1.2% and 1.8% annual risk might seem small. But if you’re a parent with young kids, or you work in a hospital, that extra 0.6% matters.

This is where shared decision-making shines. It doesn’t just say, "This drug works." It says, "Here’s what this drug might cost you-and what it might give you. What’s worth it to you?"

What’s Changing Now

The field is evolving fast. In March 2023, the FDA cleared the first AI-powered decision support tool for rheumatoid arthritis: ArthritisIQ. It pulls data from your electronic health record and your own symptom reports to generate a personalized risk-benefit profile. The Multiple Sclerosis Association of America launched the "MS Values Compass" in February 2023-it helps patients rank what matters most: "Can I travel?" "Can I get pregnant?" "Can I keep working?" Insurance companies are catching on too. Medicare Advantage plans now tie 9% of payments to patient experience scores-and shared decision-making is a big part of that. The Choosing Wisely campaign has 17 autoimmune-specific recommendations urging doctors to involve patients in treatment choices.

In Europe, the European League Against Rheumatism now requires SDM documentation when starting biologic therapy. As a result, European doctors prescribe biologics more appropriately than U.S. doctors-22% more so, according to a 2022 study.

What You Can Do

If you have an autoimmune disease, here’s how to make sure you’re part of the decision:

• Ask: "What are my options?" Don’t settle for "We can try this drug."
• Ask: "What does the data say about how well each works?" Ask for percentages, not just "it’s effective."
• Ask: "What are the real risks?" Not "there’s a small chance," but "how many people out of 100 have this side effect?"
• Ask: "Which option fits my life?" If you travel often, work nights, or care for kids, say so.
• Use free tools. The Arthritis Foundation and National MS Society have downloadable decision aids. Print them. Bring them to your appointment.

And if your provider doesn’t use these tools? Ask if they can. Many don’t know they’re available. Others need a nudge to use them.

Final Thought: It’s Not About Being Right. It’s About Being Right for You.

There’s no single best treatment for autoimmune diseases. What works for one person might be dangerous or impractical for another. Shared decision-making doesn’t promise perfection. But it does promise alignment. It brings science and soul together. It turns treatment from something done to you into something chosen with you.

And in a world where chronic illness lasts decades, that matters more than ever.