The Power of Patient Advocacy in Genomics  

Genomics is a multi-disciplinary endeavour, requiring many different specialisms to work together to collate, analyse and understand enormous amounts of precious health data from patients and close family members. Patients and their representatives have an essential contribution to make here, adding value by sharing their lived experiences with researchers and healthcare decision-makers, and thereby improving outcomes for everyone involved.

In a new free online course, our expert educators explore mechanisms for integrating patient insights into the research process and in shaping the delivery of genomic medicine, through a wide variety of case studies from around the world.

‘The Power of Patient Advocacy in Genomics – Influencing Research, Clinical Practice and Decision-Making’, has been specifically designed to inform and inspire anyone who is interested in learning more about the role that patient advocates can play in improving genomics research or medicine. It also encourages learners to reflect on any advocacy role they may be developing, and includes a peer-reviewed exercise to help them develop a plan to take this further.

The first step to successful advocacy is to understand the context one is operating in. Our course begins with an overview of genomics research and medicine, explaining the key concepts that define the field. No prior knowledge of genomics is required, although some familiarity with genetic disorders or cancer would be helpful.

Learners will then consider many of the different ways that patient advocates can contribute to genomics research or medicine, drawing on contemporary case studies that illustrate the impact of advocacy approaches in a range of contexts. These include setting up patient groups, informing healthcare service design and delivery, shaping policy at the national level, driving forward research, determining who should have access to precious genomic data and under what circumstances, and using creative media to share patient perspectives with clinicians, researchers and policymakers.

Patient advocacy involves considerable emotional labour; continually drawing on one’s own lived experience can become exhausting.  The course continues by equipping aspiring advocates with techniques that enable them to acknowledge this and practice self-care, in order to develop their sustainable advocacy practice over the coming years.

All of this course material will enable aspiring (or current) patient advocates to be effective collaborators with researchers and healthcare professionals, in a variety of genomics settings. 

Many of the world’s major research organisations and health leaders recognise the importance of ensuring that patients and their representatives are included in the development of new genomics initiatives. So this course should also be of interest to any researchers or healthcare professionals who are working to bring more patient voices into their own practice. 

The course starts in September, and will run live-monitored forums for four weeks.

Find out more about the course from our lead educator in the course trailer below:

If you are interested in participating in this online learning experience, sign up below and start learning in September.