The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making
22 September–7 December 2025
FutureLearn platform, online
Discover how patients and research participants can shape genomics and drive real-world impact in healthcare
Overview
Free Certificate of Achievement available on satisfactory completion
Start Date: The course is available for a year from 22nd September 2025.
The course will be facilitated during the live period. Once registered, you will then have one year access to the course.
About the course:
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.
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.
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.
Who is this course for?
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.
Learning outcomes
What will you achieve?
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…
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Articulate the range of different ways in which patients and their representatives can contribute to genomics research and clinical practice
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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
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Identify key communication and advocacy skills for representing patient and family interests in genomics across formal and informal settings
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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
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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
Programme and start dates
Course start date:
This course will start on 22nd August 2025
What topics will you cover?
Building on a foundation on why genomics matters, the course provides practical guidance on how patients and advocates can get started in genomics advocacy, from understanding their roles to developing key skills. Learners will explore strategies for influencing research, policy, and public understanding, while also recognising the conditions needed for effective advocacy and its limitations. The final week focuses on reflection and sustainability, where learners draft their own advocacy plan, engage in peer review, and consider the future directions of patient advocacy in genomics.
Educators
Educators, Developers and Contributors
Educators:
Jillian Hastings Ward, Lead Educator
Independent patient advocate, parent/carer for son with ultra rare genetic disorder. Non-Profit Board member, GRI-UK and poet.
Jillian Banfield
Lead for Patient Partnership in CIHR’s Institute of Genetics, Canada. Jillian works to build the Institute’s program around patient partnership in research.
Ai Ling Sim-Devadas
Patient advocate, breast cancer survivor and a PPI practitioner, amplifying patient voices in medical research and education at the Lee Kong Chian School of Medicine, Singapore.
Michelle Bishop
Associate Director, Learning and Training at Wellcome Connecting Science. With a PhD in genetics education, Michelle has worked for over 13 years in the development and delivery of genetics and genomics education in the UK.
Education Developer
Dusanka Nikolic – Wellcome Connecting Science, UK
Coordinators
Katherine Kaldeli – Wellcome Connecting Science, UK
Zoey Willard – Wellcome Connecting Science, UK
International Contributors:
What's included
The Wellcome Connecting Science Learning and Training team are offering everyone who joins this course a free digital upgrade, so that you can experience the full benefits of studying online for free. This means that you get:
- Unlimited access to this course
- Includes any articles, videos, peer reviews and quizzes
- Tests to validate your learning
- A PDF Certificate of Achievement to prove your success when you’re eligible
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