The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making
18 May–20 September 2026
Massive Open Online Course - FutureLearn platform
The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making
Overview
Duration: 5 weeks, 3 hours per week
No Fees: Free Certificate of Achievement available on satisfactory completion
Start Date: The course will be facilitated by the educators for five weeks (18 May-21 June 2026). After that, it will remain open for enrolment until 20 September 2026, but without active facilitation. All learners will retain access to the course materials for one year.
Why join this 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
Course start dates
This course will be open for enrollment from 18 May to 20 September 2026.
Live facilitation between 18 May and 21 June 2026.
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
Jillian Hastings Ward
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.
Wellcome Connecting Science
Katherine Kaldeli – Education developer
Zoey Willard – Project coordinator
Testimonials
Feedback from the previous course participants
“This course has been an excellent learning experience and has deepened my understanding of how patient involvement strengthens genomic research.”
“Thank you for creating such a comprehensive and methodical course that truly explored all aspects of advocacy.”
What's included
Wellcome Connecting Science 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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