The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making

Explore the role of patient advocacy in genomics

Genomics is transforming global healthcare and research, but who gets to shape the future of this powerful science?

On this course, you’ll discover how patients, research participants and their representatives contribute meaningfully to genomic research, clinical decision-making and healthcare policy.

You’ll begin by exploring the foundations of genomics, its role in medicine, and why public and patient involvement is vital for ethical, equitable progress. You’ll reflect on challenges like data ethics and diversity in genomic studies.

Build your confidence and skills as a patient advocate

Your learning continues with an exploration into how individuals and communities are influencing genomics. You’ll discover how patient voices can help to set research priorities, co-design studies, and shape more inclusive healthcare.

Through international case studies, you’ll see how lived experience can guide change in diverse global settings.

Develop your communication and co-creation toolkit

You’ll practise key advocacy skills like storytelling, goal setting, and peer collaboration, while considering the personal impact of advocacy.

Reflection activities will help you build strategies tailored to your goals, whether you’re new to advocacy, expanding your role or keen to support others’ advocacy through your own research or healthcare work.

Make a real-world impact in the genomics ecosystem

By the end of this course, you’ll feel empowered to participate in and influence the genomics ecosystem.

With your personal story or advocacy plan in hand, you’ll be ready to join research discussions, connect with professionals, and shape a future where diverse patient voices lead the way.

This course is designed for patients, participants, caregivers and representatives who want to contribute to genomics research and healthcare. It’s also ideal for clinicians and researchers aiming to strengthen patient involvement in their work.

This course is designed for patients, participants, caregivers and representatives who want to contribute to genomics research and healthcare. It’s also ideal for clinicians and researchers aiming to strengthen patient involvement in their work.

• Articulate the range of different ways in which patients and their representatives can contribute to genomics research and clinical practice
• Describe how patient advocates can influence key aspects of the research process throughout the research lifecycle and into genomics healthcare delivery, including clinical decision-making
• Identify key communication and advocacy skills for representing patient and family interests in genomics across formal and informal settings
• Explore the factors that drive people to become patient advocates, recognising the emotional labour involved and the need for self-care, to make their advocacy sustainable over the longer term
• Examine different case studies of patient involvement and advocacy in genomics research and clinical practice around the world, and reflect on these to develop your own work where applicable