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

Discover how patients and research participants can shape genomics and drive real-world impact in healthcare.

1,387 enrolled on this course

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  • Duration

    5 weeks

  • Weekly study

    3 hours

  • 100% online

    How it works

  • Digital upgrade

    Free
Overview
Syllabus
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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.

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Skip to 0 minutes and 13 seconds Hi, and welcome to our course. My name is Jillian Hastings Ward, and I’m a patient advocate living in Britain. My son is severely disabled. And he’s the reason why I got into genomics when myself, my husband, and my son had our whole genome sequenced as part of the 100,000 Genomes programme. Genomics is an exciting branch of science and medicine that’s been gaining momentum around the world in recent years. It uses large amounts of data about individual people to make scientific discoveries about what it is that makes us who we are, how we can treat health conditions which have a genetic root, and how we can understand more about the world’s population.

Skip to 0 minutes and 50 seconds Due to its complexity and the value of the data involved, genomics has to be a team endeavour. These teams include multidisciplinary professionals encompassing expertise in biological science, data science, medicine, law, and ethics. Patient advocacy isn’t a new discipline, but it’s more important than ever in the field of genomics. We have to make sure that the people whose data are powering these new discoveries have a say in how it’s used, and to make sure that people with lived experience as patients and caregivers have the opportunity to shape the development of medical services around the world for the benefit of everyone. That’s why we’ve prepared this course on the power of patient advocacy in genomics. We hope you enjoy it.

Skip to 1 minute and 30 seconds And we hope that everyone comes away with something new to apply in their own practise. Let’s get started.

Syllabus

  • Week 1

    Why genomics matters

    • Introduction to the course

      This activity welcomes learners and sets expectations. It introduces the course structure, learning approaches, educators, and key terminology.

    • Foundations of genomics: scientific and clinical applications

      This activity introduces what genomics is, how it is used, and how to explain it in different cultural contexts. It also outlines the practical steps in the journeys of genomics research participants and patients.

    • Patient advocacy in genomics

      This activity highlights the importance of involving both patients and research participants in shaping healthcare and research. It explains their distinct roles and includes expert insights on the value of their voices.

    • Your learning progress

      You will find a short quiz and a summary of the week 1 learning.

  • Week 2

    How genomics is delivered

    • Behind the scenes

      This activity explores the role of large-scale data and biobanks in advancing genomics, and how artificial intelligence is transforming the analysis and application of genomic information.

    • Ethical and equity considerations

      In this activity, we explore the ethical dimensions of genomics, and its broader impact on individuals and their families. We examine issues of equity, encouraging learners to reflect on how genomics can be made fair for all.

    • Rollout of genomics around the world so far

      This activity looks at how genomics is being adopted internationally, highlighting key developments and approaches to integrating genomics into healthcare and research. It presents a case study on genomics in UK.

    • Your learning progress

      In this activity, you can check your learning by taking a short quiz. A summary of the week is given.

  • Week 3

    Getting started in advocacy

    • What does advocacy really mean?

      In this activity, explore how people with lived experience get involved in research and healthcare, what engagement and involvement mean, and a simple framework to understand the range of participation.

    • Starting point roles for patients and advocates in genomics

      In this activity, learn how people with lived experience have advocated through data sharing, storytelling and setting up support groups - powerful, often foundational ways to drive change.

    • Getting started: skills for advocacy in genomics

      This activity explores personal and community advocacy, offering guidance on sharing patient stories. You will hear about resources that are available to you to start or advance your advocacy and research skills.

    • Your learning progress

      In this activity, you will have an opportunity to check and reflect on your learning so far.

  • Week 4

    Developing your advocacy

    • Involvement in research and policy

      This activity explores diverse roles of patients as partners in research and healthcare. It covers involvement in decision-making, data oversight, education, language use, and real-world case studies illustrating patient impact.

    • Shaping genomics literacy

      This activity explores how to use respectful, inclusive language in genomics and illustrates it with a case study on making genomic research culturally safe for a community.

    • Conditions for successful advocacy

      This activity shares expert and patient perspectives through videos and highlights from key readings, illustrating real-world experiences and insights in patient involvement and advocacy.

    • Limits and constraints to advocacy

      This activity examines the practical and cultural challenges of patient advocacy, including resource constraints, navigating hierarchies, organisational dynamics, and the influence of cultural context on advocacy efforts.

    • Your learning progress

      In this activity, take a short quiz and reflect on your learning so far.

  • Week 5

    Reflection and development

    • Sustainable advocacy

      This activity starts with an introduction, followed by reflections on the emotional drivers behind patient advocacy and the importance of self-care. Learners engage with a poll and a case study from Lauren Roberts at RareMinds.

    • Peer review project: write your own advocacy plan

      This activity guides you through writing your advocacy plan, reviewing peers’ work using a rubric, and reflecting on feedback - both given and received.

    • The future of patient advocacy in genomics

      By this stage in the course, learners had time to reflect on their own experiences of patient advocacy and consider how they might take these forward. We share tips from our expert contributors in this activity.

    • Your learning progress

      The final steps offer a recap and discussion, a final test to check your learning, and resources for further exploration - along with course acknowledgements. You will also find the glossary of terms used in the course.

When would you like to start?

Start straight away and join a global classroom of learners. If the course hasn’t started yet you’ll see the future date listed below.

  • Available now

Learning on this course

On every step of the course you can meet other learners, share your ideas and join in with active discussions in the comments.

What will you achieve?

By the end of the course, you‘ll 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
  • 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

Who is the 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.

Who will you learn with?

Jillian Hastings Ward

I'm an independent patient advocate, parent of a son with an ultra rare genetic disorder, non-profit Board member (GRI-UK.org), and sometimes a poet. Genomics fan since 2016.

Jillian Banfield

Jillian Banfield is the Lead for Patient Partnership in CIHR’s Institute of Genetics. She works to build the Institute’s program around patient partnership in research.

Ai Ling Sim-Devadas

I am a 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

I’m a trained genetic counsellor with 20 years’ experience in genomics education. I’ve led national training in the UK and contributed to international initiatives shaping patient-centred genomics.

Who developed the course?

Wellcome Sanger Institute

Wellcome Sanger Institute Scientific Training and Events develops and delivers conferences, courses, and networking events aligned with the distinctive science led by the Institute’s core programmes, focusing on disease, planetary, and engineering genomics. 

What's included?

Wellcome Sanger Institute 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

    • Learning on FutureLearn

    Your learning, your rules

    • Courses are split into weeks, activities, and steps to help you keep track of your learning
    • Learn through a mix of bite-sized videos, long- and short-form articles, audio, and practical activities
    • Stay motivated by using the Progress page to keep track of your step completion and assessment scores

    Join a global classroom

    • Experience the power of social learning, and get inspired by an international network of learners
    • Share ideas with your peers and course educators on every step of the course
    • Join the conversation by reading, @ing, liking, bookmarking, and replying to comments from others

    Map your progress

    • As you work through the course, use notifications and the Progress page to guide your learning
    • Whenever you’re ready, mark each step as complete, you’re in control
    • Complete 90% of course steps and all of the assessments to earn your certificate

    Want to know more about learning on FutureLearn? Using FutureLearn

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