Shared decision making in multiple sclerosis (MS) is becoming increasingly important as patients seek to play a more active role in their healthcare. In this episode, we explore how collaborative decision-making between doctors and patients can improve treatment outcomes and quality of life.
Together with PD Dr. med. Jens Ulrich Rüffer, an expert in patient education and quality of life, we discuss how shared decision making (SDM) works, why it matters, and how digital tools and artificial intelligence (AI) may support this approach in the future.
This article is based on a translated interview originally conducted in German in November 2024.
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Who are you, Dr. Rüffer?
PD Dr. med. Jens Ulrich Rüffer:
I am a physician and oncologist. I worked for about ten years at the University Hospital in Cologne. Early in my career, I became very interested in how patients cope with their disease—not only physically, but also psychologically.
This led me to focus on quality of life, patient information, and ultimately patient empowerment. Through this work, I discovered shared decision making, which has become my main focus ever since.
Why did you focus on patient participation?
PD Dr. med. Jens Ulrich Rüffer:
To be honest, I didn’t originally plan this path. I struggled at first to find my role in medicine. But in oncology, I found a meaningful connection with patients.
Over time, I realized that the healthcare system often does not allow enough space for real dialogue. I wanted to change that. That’s why I moved into patient education and participation.
When patients are actively involved, we see better outcomes—but the system still needs to support this more consistently.
📄 Recommended White Paper
Together with my podcast guest today, PD Dr. med. Jens Ulrich Rüffer, and others, I contributed to a white paper on the opportunities and challenges of AI in healthcare. In it, we explore how digital technologies can support doctor-patient communication and strengthen shared decision-making (SDM) 👉Read the white paper
What is shared decision making?
PD Dr. med. Jens Ulrich Rüffer:
Shared decision making means that doctors and patients make decisions together on equal footing.
Patients need clear, evidence-based information about:
their condition
treatment options
benefits and risks
At the same time, doctors must understand the patient’s preferences, values, and life situation.
Only when both perspectives come together can we make a truly shared decision.
What are the benefits of shared decision making?
PD Dr. med. Jens Ulrich Rüffer:
There are clear benefits for both patients and healthcare professionals.
Doctors often feel frustrated when patients do not follow treatment plans. But when patients are involved in the decision, adherence improves significantly.
This leads to:
better outcomes
more realistic expectations
greater satisfaction
In the end, shared decision making improves the overall quality of care.
Why is shared decision making becoming more important?
PD Dr. med. Jens Ulrich Rüffer:
Healthcare systems worldwide face limited resources—both financially and in terms of staff.
Shared decision making helps ensure that patients receive the most appropriate treatment for their individual situation. It can also reduce unnecessary interventions.
For example, follow-up examinations can sometimes be reduced without compromising safety, which can lower stress for patients and save resources.
What challenges exist in implementing SDM?
PD Dr. med. Jens Ulrich Rüffer:
There are many studies demonstrating the effectiveness of SDM. The real challenge is implementation in everyday practice.
Often, projects are successful in the short term but are not sustained long-term.
In Kiel, we developed a comprehensive approach that included:
trained physicians
informed patients
decision coaches
This system worked very well—but it requires commitment and structural support.
What tools support shared decision making?
PD Dr. med. Jens Ulrich Rüffer:
We used four main components:
First, we encouraged patients to ask three key questions:
What are my options?
What are the benefits and risks?
How likely are these outcomes in my case?
Second, we provided web-based decision aids, so patients could prepare at home.
Third, we trained physicians in shared decision making.
Fourth, we introduced decision coaches—often nurses—who support patients throughout the process.
This combination significantly improved patient knowledge and satisfaction.
Can patients delegate decisions?
PD Dr. med. Jens Ulrich Rüffer:
Yes, absolutely—and that is an important point.
Some patients prefer not to make the final decision themselves. In that case, they can consciously delegate the decision to their doctor.
As long as this choice is made together, it is still shared decision making.
How can shared decision making be measured?
PD Dr. med. Jens Ulrich Rüffer:
We used different methods.
For example, patient questionnaires to assess perceived involvement. We also recorded consultations and provided feedback training for physicians.
The results showed improved communication and greater patient involvement.
What role does artificial intelligence play?
PD Dr. med. Jens Ulrich Rüffer:
Artificial intelligence offers many opportunities.
It can help:
personalize information
structure complex medical content
support patient understanding
In the future, AI tools such as chatbots could help patients prepare for consultations and ask better questions.
Quickfire Q&A
For me, shared decision making is…
The future of medicine.
What would you like to see in the next five years?
Wider implementation of shared decision making.
Do you have a recommendation?
In the original German episode, the initiative “Share to Care” is mentioned. As this resource is only available in German and healthcare systems differ internationally, the editorial team (Nele) has added the following global resources:
→ The Multiple Sclerosis International Federation (MSIF) and the European Multiple Sclerosis Platform (EMSP) provide valuable information on patient empowerment and informed decision-making in multiple sclerosis.
→ For a broader, international perspective on shared decision making, the International Shared Decision Making Society offers evidence-based insights and resources.
Farewell
Is there anything else you’d like to share with our listeners?
PD Dr. med. Jens Ulrich Rüffer:
Thank you very much for giving me the opportunity to share this topic that is so close to my heart. I hope you take something away from this and advocate for shared decision-making to become standard care. Only together can we overcome resistance and achieve patient-centered care.
Our goal is to provide future patients with even better treatment and to place people more firmly at the center of the healthcare system.
Where can people find you online?
PD Dr. med. Jens Ulrich Rüffer:
You can reach me and my team in Cologne, Germany, at any time via Share-to-Care. We’re happy to answer inquiries, schedule appointments, and are open to dialogue.
Editor’s note: Since “Share to Care” is a Germany-based initiative, international readers can instead turn to global resources such as the Multiple Sclerosis International Federation (MSIF), the European Multiple Sclerosis Platform (EMSP), their national MS patient organization, or the International Shared Decision Making Society for further information and support.
See you soon and try to make the best out of your life,
Nele
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