Shared Decision-Making in Autoimmune Care: Balancing Risks and Benefits

When you’re living with an autoimmune disease like rheumatoid arthritis, multiple sclerosis, or lupus, every treatment choice comes with trade-offs. One drug might cut your flare-ups in half-but it could also raise your risk of a rare, life-threatening infection. Another might be easier to take but less effective. In these situations, the best decision isn’t just about the science. It’s about your life. That’s where shared decision-making comes in.

What Shared Decision-Making Really Means

Shared decision-making (SDM) isn’t just a buzzword. It’s a structured way for you and your doctor to work together to pick the right treatment. Gone are the days when doctors simply told you what to do. Today, SDM means you’re not just a passive recipient of care-you’re an active partner.

The process starts with honest conversation. Your doctor doesn’t just hand you a pamphlet and say, "Take this." Instead, they ask: "What matters most to you?" Do you need to travel often? Are you planning a pregnancy? Are you terrified of needles? These aren’t small details-they’re deal-breakers.

Studies show that when patients are truly involved, they stick with their treatment longer. In one study of over 3,000 people with autoimmune conditions, 82% stayed on their prescribed therapy when they’d made the choice alongside their doctor. That’s compared to just 63% when decisions were made without them.

How It Works: The Three Talking Phases

Real shared decision-making follows a clear structure, usually taking just 9 to 14 minutes in a typical appointment. It breaks down into three simple steps:

1. Team Talk - "We’re in this together." Your doctor checks in: "What do you already know? What are you worried about?" This builds trust before diving into options.
2. Option Talk - "Here’s what’s possible." No vague promises. Instead, clear numbers: "This drug reduces flares by 60%, but 1.8 out of every 100 people get a serious infection each year." Tools like decision aids-videos, booklets, or apps-show these risks visually, not just as percentages.
3. Decision Talk - "What feels right for you?" You weigh the numbers against your life. Maybe you choose the less effective pill because you can’t handle monthly infusions. That’s okay. And your doctor should be okay with it too.

One patient, a nurse with rheumatoid arthritis, told her rheumatologist she couldn’t miss work for weekly injections. Together, they switched from an injectable biologic to an oral drug. Her disease stayed controlled. Her job didn’t suffer. That’s SDM in action.

Why It Matters More in Autoimmune Diseases

Autoimmune conditions are tricky because they don’t follow a one-size-fits-all path. Two people with the same diagnosis can have wildly different experiences. One might have mild joint pain. Another might face organ damage. Treatment options vary just as much.

Take multiple sclerosis. Some drugs can reduce relapses by 70%. But one of them, natalizumab, carries a 1 in 1,000 risk of a rare brain infection called PML. If you’re young, active, and planning a family, you might say: "I’ll take the risk." If you’re older, with other health issues, you might say: "No thanks." Your doctor can’t make that call for you.

Same goes for rheumatoid arthritis. Methotrexate is cheap and effective for many. But if you’re trying to get pregnant, your doctor won’t even consider it. Biologics like adalimumab work better for some-but they raise infection risk. A 2021 study found patients who used decision aids were 41% more likely to understand their options. And those who understood? They were far less likely to quit treatment later.

What’s Missing in Most Clinics

Here’s the problem: most doctors want to do SDM. But they don’t have the time, tools, or training.

A 2021 survey of rheumatologists found that 78% said they’d love to use decision aids-but they never get around to it. Appointments are 15 minutes long. Insurance doesn’t pay extra for the extra time it takes to explain risks properly. And many providers still rely on outdated habits: "This is the best option," or "I’ve seen this work for others." Worse, some patients leave appointments confused. One woman with MS said her neurologist listed three drugs in 90 seconds. No discussion. No visuals. Just names. She picked one blindly-and stopped taking it six months later because it made her too tired to care for her kids.

The gap isn’t about intent. It’s about systems. Only 22% of rheumatologists consistently use validated decision aids, even though 89% say they believe in them.

Tools That Actually Help

The good news? Tools exist-and they work.

The Arthritis Foundation offers free, easy-to-use decision aids for RA, psoriatic arthritis, and lupus. They’re used by over 150,000 people since 2017. The National MS Society’s "MS Values" tool asks you to rank what matters most: preventing relapses? Avoiding hospital visits? Staying active? Then it matches you with drugs that fit.

The University of Michigan’s "MS Decisions" tool changed how risks are shown. Instead of saying "0.1% risk of PML," it says: "1 in 1,000 chance over two years." That’s clearer. And patients love it. One review called it "the only thing that made me feel like I wasn’t being sold a cure."

Even AI is stepping in. In March 2023, the FDA cleared the first AI-powered tool for rheumatoid arthritis called ArthritisIQ. It pulls data from your EHR, your symptoms, and your lifestyle to generate a personalized risk-benefit report. It doesn’t decide for you. It just makes the choices easier to understand.

When Shared Decision-Making Doesn’t Work

SDM isn’t magic. It doesn’t work in emergencies. If you’re having a severe flare-swollen joints, high fever, sudden vision loss-you need treatment now. There’s no time for a 10-minute chat.

A 2020 study found nearly half of rheumatologists said SDM was impossible during acute flares. That’s fine. But here’s the catch: even in those moments, you should still be asked: "What would you want if this keeps happening?" That way, when things calm down, you’re not starting from scratch.

Another problem? Health literacy. If you don’t understand numbers, statistics, or medical terms, you can’t make informed choices. That’s why visual aids matter. A graph showing "1 in 100" is better than "1%". A picture of a needle versus a pill? That speaks louder than a paragraph.

And then there’s the digital divide. Older patients, those with lower education, or people without smartphones get left behind. One study found they get 37% less benefit from digital tools without extra help-like a nurse sitting with them, walking through the app.

What You Can Do

You don’t have to wait for your doctor to lead. You can start this conversation yourself.

Before your next appointment:

• Write down your top three concerns: pain? fatigue? side effects? travel?
• Ask: "What are my options?" and "What are the real risks?"
• Request a decision aid. Many are free online.
• Ask: "Can we go over the numbers? I want to understand what "1 in 1,000" really means."

And if your doctor brushes you off? Push back. You have the right to understand your care. You’re not asking for special treatment-you’re asking for standard care.

The Bigger Picture

This isn’t just about one appointment. It’s about a system that’s changing.

Medicare now ties 9% of payments to patient experience scores-scores that include whether you felt involved in decisions. The European League Against Rheumatism requires SDM documentation for biologic prescriptions. And the U.S. government now mandates decision aids for certain treatments under the 21st Century Cures Act.

The message is clear: shared decision-making isn’t optional anymore. It’s part of the standard of care.

And for people with autoimmune diseases? It’s the difference between managing a condition-and truly living with it.