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

Beyond being involved in shaping research projects, increasingly patient partners are involved in the oversight of research and health data use. Why is patient involvement in the oversight of research …

As we have seen earlier, patients can contribute as partners to research in many ways throughout the research cycle. We will now cover some of the more advanced ways that …

Congratulations on finishing Week 3! You’ve learned about many ways that patients can contribute to research and health care. You’ve learned about the continuum from participating in research all the …

Advocacy is about effecting change. By clearly articulating the challenges, hopes and priorities of your patient community, you can influence decisions and drive change. In the next week of the …

There can be a lot to consider when you begin sharing your story as a patient. Some questions you may want to ask yourself include: What do I hope to …

A vital role that patients play is in establishing patient organisations. These organisations help patients find each other and can provide a strong voice to advocate in health care and …

Another way that patients start to get involved in advocacy is through sharing the story of their lived experience. Sharing stories can happen in different settings, like being invited to …

How do patients get involved in advocacy in genomics? For many people, their first experience in advocacy in genomics begins through sharing their data as a research participant. For example, …

Let’s look at a spectrum of participation framework One framework from Australia describes a continuum ranging from participating in research, which involves contributing data but not influencing the research agenda, …

Congratulations – you’ve made it to the end of Week 1! We have covered a lot this week. You’ve read about the origins of genomic research and how this is …

‘Nothing about us, without us’ – is a core principle in patient involvement and patient advocacy The value of patient and family partnerships Involving patients and their families in the …

In this section, we will explore some of the ways that people with lived experience of a health condition can influence genomics research and ultimately healthcare. Patients as research participants …

As we begin this course, it is important to recognise that people engage with healthcare and research in many different ways. Each of us may find ourselves in different roles …

Genomics is a complex and expensive field of study, due to the high volumes of valuable data involved and the ongoing development of innovations which enable us to understand more …

Genomics has enjoyed consistent support from the UK government since 2012 In 2013, Genomics England was established. Its mission was develop and deliver the 100,000 Genomes Project, to demonstrate the …