Patients as an Integral Part of Research and Development

Lara Strüder  

When we picture clinical research, many of us imagine scientists and doctors running clinical trials on patients as “test subjects”. But today, patients are taking on a much more central role in research. They’re no longer just participants, they shape the questions researchers ask, the solutions that are designed, and even how results are communicated. 

This approach is called participatory research. Instead of decisions being made in isolation, patients, families, professionals, and community members work together to create knowledge. The goal is to perform research that truly improves health and well-being. 

Why is This Important? 

Traditionally, patients were just recipients of care, with little control over how treatments were designed and how outcomes affected them. When patients are involved, research becomes more relevant. They help highlight what really matters, guiding the development of treatment and resources that actually make a difference. 

For example, people living with dementia helped design a toolkit called “Living with Dementia”, full of practical tips for daily life. Their input made the resource far more useful than if researchers had designed it alone. 

Participatory research also empowers patients. Who knows a patient's day-to-day challenges better than the people living with the condition? Their insights lead to treatments and tools that work in real life, not just on paper. 

Fun Facts: Patient-Invented Solutions 

Many medical devices started as ideas from patients themselves! These include injection ports created by people with diabetes, or “shower shirts” designed by breast cancer patients to prevent infections after surgery. These innovations have since helped thousands, improving care and outcomes. 

Form Feedback to Partnerships 

Real participation goes beyond only “asking for feedback”. It means sharing power over research. Patients are involved in decision-making from start to finish. This builds trust, reduces stigma, and gives patients control over their own health journey. 

Bigger Picture 

Involving patients doesn’t just improve outcomes, it can lower treatment costs and create solutions that fit real-world needs. It also transforms the patient-professional relationship from “doctor knows best” to an equal partnership where everyone learns from each other.