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Side-By-Side: TSF’s Guide to Shared Decision-Making

Shared decision-making (SDM) is a collaborative process where patients and healthcare providers make medical decisions together. Unlike other models where providers make decisions for patients or patients are left to decide alone, SDM blends clinical expertise with the patient’s values, goals and preferences.

For people facing rare diseases, the limited research and few treatment options create uncertainty. SDM is an essential tool that helps patients gain clarity and support, while providers offer insights on risks, benefits, and evidence.

This approach fosters trust, improves communication and enhances outcomes like treatment adherence and satisfaction. Community involvement further enriches SDM through shared experiences and emotional support. Ultimately, SDM ensures that decisions are informed, compassionate and centered on what matters most to the patient. 

Side-by-Side is an educational series brought to you by The Sumaira Foundation that highlights the impact of SDM and empowers viewers with the knowledge and tools to put it into practice. Let’s dive in!

EP1: Empowered Choices: The Essentials of Shared Decision-Making

The first episode of Side-by-Side unpacks the meaning of shared decision-making and why it’s a powerful tool for those living with rare conditions. You’ll learn the core principles that define SDM and how they can be put into practice. By the end of this episode, you’ll have learned the 5 building blocks of SDM and understand why this approach is recognized as the gold standard in patient-centered care.

To help you prepare for an upcoming doctor’s appointment, including a helpful checklist, click the button below:

TSF’S GUIDE TO SHARED DECISION-MAKING

EP2: Patient Power: Navigating Shared Decision-Making from Your Perspective

In episode 2 of Side-by-Side, we meet Marion Jones, an NMOSD patient and marathon runner, who shares how shared decision-making transformed her care. Marion emphasizes the importance of being informed, asking questions and engaging in meaningful conversations with providers. Early on, she lacked information and support, which led to a relapse. Today, she advocates for patient involvement and celebrates her return to running, culminating in completing the NYC Marathon. Living with a rare disease can be overwhelming, both physically and emotionally, but a supportive community and care team can help guide you through every step, especially when personal goals shape treatment.

To help you prepare for an upcoming doctor’s appointment, including a helpful checklist, click the button below:

TSF’S GUIDE TO SHARED DECISION-MAKING

EP3: INSIDE THE DOCTOR’S MIND: SHARED DECISION-MAKING FROM THE PHYSICIAN’S Perspective

In episode 3 of Side-by-Side, we meet Dr. Michael Levy, who shares his experience and insights on shared decision-making from a physician’s perspective. Dr. Levy defines shared decision-making as a patient-led process, with physicians and families offering guidance. The doctor’s role is to present unbiased data so patients can align choices with their personal goals. He stresses the importance of trust and open communication, noting that true shared decision-making is ongoing. When patients are involved and take ownership of their treatment, outcomes and adherence improve significantly. His advice: advocate for yourself and speak up.

To help you prepare for an upcoming doctor’s appointment, including a helpful checklist, click the button below:

TSF’S GUIDE TO SHARED DECISION-MAKING

EP4: navigating the doctor’s visit: key steps for effective SHARED DECISION-MAKING

In the final episode of Side-by-Side, we accompany Marion to her first doctor’s appointment with Dr. Michael Levy. This episode emphasizes the power of shared decision-making; when patients and doctors collaborate, outcomes improve for all. By staying informed, asking questions and actively participating, patients become essential partners in their own care. By the end of this episode, you’ll have a clear understanding of what makes a medical consultation truly effective and how to communicate and collaborate to achieve the best health outcomes.

To help you prepare for an upcoming doctor’s appointment, including a helpful checklist, click the button below:

TSF’S GUIDE TO SHARED DECISION-MAKING

This program was made possible with support from

Industry Partners

Alexion Genentech Portal Instruments ucb logo

Community Partners

Autoimmune Association Brain Health Center of the Rockies couch pennies foundation emsp global advocacy alliance National Infusion Center Association Neurology Live Logo Siegel Rare Neroimmune Association
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