Welcoming our Genomic Patient Ambassadors

Last week we were excited to host a welcome event for our first group of Genomic Patient Ambassadors. Our Patient Ambassadors are members of the public from across our region who come from a wide variety of backgrounds and are all interested in genomics. The most important part of their role is making sure that patients are represented at every stage of our new NHS Genomic Medicine Service. This event has been a long time coming because of the COVID-19 pandemic so read on to find out how we got on…

Meeting virtually

Our welcome event went ahead virtually due to the current COVID-19 pandemic and it worked really well. It was convenient for our Ambassadors not to have to travel in to the hospital to meet us and it took less time out of their day so it looks like we will continue to meet like this going forwards. 

We hope to be able to host some events for patients and the public next year when it is safer to meet in person and it would be really great for some of our Ambassadors to be able to attend those in person. 

Meeting highlights

After spending so many months emailing with our Ambassadors it was fantastic to meet some of them at our event and put faces to the names (we look forward to meeting everyone else!) Everyone was really engaged and asked some insightful questions. 

Some of the topics we talked about at the meeting were:

As well as getting to see our Ambassadors faces we also got to hear a little bit about why they wanted to become Ambassadors in the first place. Everyone had very different backgrounds and reasons for signing up, just a few of them are listed here:

  • Someone has a genetic mutation that runs in their family, they want to know more about genomics and supporting families
  • A nursing student who wants to see how genomics fits into that and bring it into their practice
  • A student who wants to represent genomics and raise awareness of it with younger people
  • Someone who did a degree with modules focused on genetics and now works in healthcare communications
Don't take our word for it!

While we really enjoyed meeting our Ambassadors it was great to get some feedback from them on they found the session as well.

"It was very insightful. I look forward to
being part of this initiative"
"It was a brilliant welcome event;
it is well organised, clear and quite straightforward"
What's next?

Now that we’ve got to know each other a little bit and we’ve given our Ambassadors the first activity they can really get stuck in to the role. We will be in regular communication with our Ambassadors to get feedback on the process but also to find out which areas of our Service they are most interested in being involved with. 

This diagram shows how our Genomic Patient Ambassadors can help us improve the Service and better meet patients’ needs.

Do you want to join us?

We are always looking for more people to join our group of Genomic Patient Ambassadors. We want our group to really be representative of our region and to get as much input from the public as we can. 

If this is something you would like to find out more about, take a look at our dedicated webpage or get in touch with our team by email at gst-tr.southeastglh@nhs.net

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With any Whole Genome Sequencing (WGS) test ordered, a Record of Discussion (RoD) form will also need to be submitted. This document is to record the patient’s consent for genomic testing and their choice on taking part in research. Guidance on the patient choice conversation can be found here
This RoD form will be available for clinicians to download from this webpage. Once completed with the patient, it can be send to the lab with the corresponding test order form and sample.
Tests available to order will be listed in the National Genomic Test Directory. A test order form will soon be made available for clinicians on this webpage to download and complete. This form will include the address of the laboratory that the appropriate sample and completed form needs to be sent to.
Until the new Genomic Laboratory Service goes live, please continue to follow existing test order processes.
Later this year, the online test ordering tool for Whole Genome Sequencing will be integrated into the National Genomics Informatics System (NGIS) and clinicians will be able to search or filter to find a clinical indication, confirm eligibility criteria and start the test request process for their patient.