What is patient engagement in research?
Patient engagement in research means actively involving patients and carers in the planning, design, and execution of research projects.
It ensures that research is aligned with real-world needs and experiences.
Patient engagement in research is no longer a “nice to have” — it is becoming a fundamental requirement for relevant, ethical, and effective healthcare innovation.
At its core, patient engagement means actively involving patients and carers in the planning, design, and execution of research. When done well, it ensures that research reflects real-world needs, lived experiences, and meaningful outcomes.
“Patient engagement is not about adding a patient to a meeting — it is about changing how decisions are made.”
What does patient engagement look like?
In practice, patient engagement can take many forms:
- Participation in advisory boards
• Co-design of research protocols
• Input on patient-facing materials
• Collaboration on dissemination and communication
- Participation in advisory boards
However, true engagement goes beyond activities — it requires a shift in mindset, from consultation to partnership.
Benefits of patient engagement
When implemented meaningfully, patient engagement leads to:
- Higher quality and more relevant research
• Improved recruitment and retention
• Outcomes that reflect patient priorities
• Increased trust and transparency across stakeholders
- Higher quality and more relevant research
The real challenge: moving beyond tokenism
Despite its growing importance, patient engagement is still too often reduced to a checklist exercise.
Common barriers include:
- Lack of clear structures and frameworks
• Limited access for new and diverse patient voices
• Inconsistent implementation across organisations
• Tokenistic involvement without real influence
- Lack of clear structures and frameworks
“Tokenism is not engagement — it is a risk to both research quality and trust.”
How to improve patient engagement
To move from intention to impact, organisations must:
- Create accessible entry points for new participants
• Provide training and support for both patients and professionals
• Ensure fair and transparent compensation (FMV)
• Build long-term, trust-based partnerships
- Create accessible entry points for new participants
The role of AI in patient engagement
AI is rapidly emerging as a powerful enabler of patient engagement — when used responsibly.
It can help:
• Lower the barrier to entry for patients
• Provide accessible knowledge and guidance
• Support informed decision-making
• Scale patient involvement across projects
However, AI should never replace patient voices — only support and amplify them.
The PiCC United approach
PiCC United works to lower the barrier to patient engagement while strengthening quality and ethics in collaboration.
We focus on:
• Making it easier for patients to get involved
• Supporting structured and fair engagement models
• Connecting patients, professionals, and organisations
• Promoting long-term partnerships over one-off involvement
Learn more in, What is PiCC United?
Patient engagement is not a trend — it is a transformation.
The future of research depends on moving from symbolic inclusion to true partnership — where patients are not participants in the system, but co-creators of it.