Curated resources for patients and public
In response to feedback requesting additional support from our Patient and Public Voice (PPV) Panel, we have developed an outline education programme designed to build knowledge and confidence in key areas, using existing high-quality resources developed by NHS organisations.
Themes and topics have been generated via the survey shared with all panel members.
The quarterly interactive sessions with our Education and Training lead, Glenda Beaman provided the opportunity for panel members to share their feedback on the resources, discussing key learnings, as well as providing a platform for any questions to be answered.
We encourage all members of our panel to take part in this self-directed learning, and engage with the curated resources identified. Please note that this initial phase is not a paid activity; however, follow-on sessions will be eligible for NHS expenses. This approach will help ensure that these sessions are valuable and that all members can fully participate and contribute.
Thank you to our panel for their support and dedication to this important work.
Theme 1: Genomics and rare disease
What is rare disease?
Provider: NHS England Genomics Education Programme (GEP)
Format: 10 min multimedia programme
Link: https://www.genomicseducation.hee.nhs.uk/education/core-concepts/what-is-rare-disease/
Provider: Genomics England Ltd
Can patient collaboration shape the future of therapies for rare conditions?
Format: 45-minute podcast with transcript available
Theme 2: Equality, diversity and inclusion
How can we enable ethical and inclusive research to thrive?
Provider: Genomics England Ltd
Format: 42-minute Podcast with transcript available
Improving access: Equality, diversity and inclusion in genomics
Provider: NHS Central and South Genomic Medicine Service
Format: Video of 2 hours duration (recording of webinar held in October 2024)
Theme 3: Mainstreaming
How do people feel about using genomic data to guide health across a lifetime?
Provider: Genomics England Ltd
Format: 30 min podcast with transcript available
Mainstreaming of Lynch Syndrome
Provider: NHS North West Genomic Medicine Service Alliance
Format: 22 min podcast
https://www.youtube.com/watch?v=Bm7KxXmJ7bA&t=2s
Nursing, genomics and me
Provider: NHS North West Genomic Medicine Service Alliance
Format: 2 x 5 min videos featuring nurses who are applying genomics within their clinical practice
https://www.youtube.com/playlist?list=PLeq45lL5K6T5OuEx_LXXlzf-fuE06JR0W
Theme 4: Genomics in Primary Care
Genomics in Primary Care
Format: 5 min video featuring Dr. Jude Hayward
Provider: Genomics Education Programme (GEP), NHS England
Link: https://vimeo.com/256431741
The NHS PROGRESS Study: Implementing Pharmacogenetics in Primary Care with BSL - June 2023
Format: 5 min animation with BSL
Provider: NHS North West Genomic Medicine Service Alliance
Theme 5: Artificial intelligence
Can artificial intelligence accelerate the impact of genomics?
Provider: Genomics England
Format: 30 min podcast
Link: https://www.genomicsengland.co.uk/podcasts/can-artificial-intelligence-accelerate-the-impact-of-genomics
Theme 6: Ethics, consent & data in genomic medicine
Health equality and ethics
Provider: NHS North West Genomic Medicine Service Alliance
Format: 24 min Podcast
Link: https://youtu.be/NQfp4aC7CNQ?si=GLPYvFvEQKR2Hl0u
Maximising the patient benefit of genomics – the evolving role of the Clinical Genetics Services
Provider: Clinical Genetics Society
Format: publication
Link: maximising-the-patient-benefit-of-genomics-27.pdf
Consent and confidentiality in genomic medicine
Provider: British Society of Genetic Medicine
Format: publication
Link: bsgm.org.uk/media/11525/consent_confidentiality_working_report_final_online_2019.pdf