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

Rebecca Middleton is a patient advocate affected by hereditary brain aneurysms (HBA). In this video, Rebecca talks about identifying her rare disease, and its impact on her family. She explains …

Here is Jillian, your educator for week 1 of the course, welcoming you to this week’s learning In the first week, we introduce the course and lay the groundwork for …

Professor Sir Mark Caulfield set up Genomics England, which has paved the way for the development of the NHS Genomic Medicine Service in England and many genomics research initiatives around …

By this stage in the course, you’ve had time to reflect on your own experiences of patient advocacy and consider how you might take these forward. We asked many of …

Although it can feel daunting to become an advocate, patients and patient organisations are not alone. In this case study, you will hear about resources that are available to you …

In the previous step, you heard about creative methods to share lived experience. In this step, you will learn about how storytelling can be used to also help patients understand …

The impact of the project Helix of Love we just mentioned in the previous step, has been remarkable – as you will hear in this video The resources that are …

As well as developing good mental health habits, it’s also important to consider the pace of change that might be possible in your circumstances, in order for your advocacy to …

Few patient advocates planned to take up this role. For many of us, it evolved out of what we noticed about a health situation that was not going well for …

In this case study, you’ll hear an example from Rare Disease Foundation in Canada, of how patients can influence research by collaborating with academic researchers to decide priorities and how …

We hear from Azure Hermes from the National Centre for Indigenous Genomics (NCIG) at the Australian National University on how they make genomics culturally safe for a community. The video …

The Australian National Centre for Indigenous Genomics (NCIG) has a large collection of blood samples and associated health information, collected from Indigenous communities in Australia between the 1960s and 1990s. …

Week 4 educator Ai Ling welcomes you to this week’s learning While in week 3 we talked about more general skills such as story telling, this week focuses on more …

Patient voices can inform research and healthcare delivery in different ways, and at different levels. Research organisations can convene Patient Advisory Groups to assist in many aspects of their work, …

This week, we explore what advocacy means in the context of genomics, the roles patients and advocates can play, and the key skills needed to get started Reflection question What …