Your learning opportunities on this course

What are the next five weeks about?

This course takes 5 weeks, approximately 3 hours per week of learning.

The first five weeks of the course are facilitated by the course educators. After that, the course remains open for self-paced learning, although educators will no longer be actively present. You will have access to the course for a full year, allowing you to complete it at your own pace.

Week 1 and Week 2 of the course introduce the foundations of genomics, its role in medicine and research, and key ethical and equity considerations – such as data use and the need for diverse representation. It explores how genomics connects clinical care and research, emphasizing the importance of involving patients and participants to improve discovery, treatment, and healthcare systems, supported by a case study on the evolving role of patient involvement.

In Week 3, we will proceed by covering some basics about how and why patients get involved in advocacy and research. We will share different ways that patients use their lived experience to influence health care and research, including some creative methods. We will also discuss basic advocacy skills that can help you move forward.

Week 4 explores advanced forms of patient advocacy, including coproduction, patient-led initiatives, and shared decision making in research and policy. You’ll learn about some useful skills for advocacy, like how to build connections with others and how to influence change effectively – while emphasising the importance of institutional support and realistic planning. International case studies illustrate diverse approaches, alongside reflection on regional constraints and what enables effective, sustained advocacy.

Week 5 offers space to reflect and consolidate learning around genomics and involvement. You will engage in forward-looking discussions on the future of advocacy, apply your newly acquired ideas and knowledge through a practical task of drafting an advocacy plan, and you can receive some peer feedback. A compilation of excerpts form our case studies will highlight potential future models and advice for patient and participant advocacy.

Your learning outcomes:

By fully engaging with the course material and immersing yourself in the social learning opportunities provided, by the end of the course you should be able to:

• 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.