Passionate about healthcare, particularly in the areas of genomic medicine, sickle cell, cancer, maternal health and improving the diversity of genomic data?
Are you a community health advocate, community facilitator, grassroots organisation, or charity that believes in the power of community engagement to drive positive change?
If so, we invite you to express your interest in joining our community engagement partnership network as a community connector.
Genomics England and its engagement community aims to reduce health inequalities and improve patient outcomes within genomic medicine. Our vision is that all patients, regardless of their background, receive the same quality of genomics-enabled personalised medicine, supported by the latest research designed with and for people like them. Our mission is to bridge the gap between research, medical professionals, patients and communities, to ensure everyone’s voice is heard.
We are now looking to broaden our connections with communities to improve the visibility and understanding of genomics research and how this relates to healthcare, and support people to become more involved in shaping future research.
Who are we looking for?
We are seeking individuals, groups and grassroots organisations with a deep interest in healthcare and a strong desire to engage with communities both underrepresented and mainstream, to address the challenges faced by those affected by a range of conditions such as sickle cell, cancer, rare disease and maternal health issues.
While experience in community engagement is essential, we welcome all levels of interest and experience. If you have a passion for promoting and advocating for health equality, and/or equity, and are excited to facilitate meaningful discussions, we encourage you to get in touch with us.
Our key focus areas:
Maternal health issues
Rare genetic conditions
The future of healthcare and genomics
Community driven initiatives to bridge healthcare gaps
Genetic research understanding and dissemination
The relationship between our research and healthcare
Why join us?
Make an impact
Your involvement will directly contribute to improved healthcare outcomes and increased awareness of genetic research and its relationship with healthcare.
You will have the opportunity to empower communities with accurate information, resources and a platform for their voices to be heard.
Connect with like-minded individuals, researchers and organisations who share your passion and a common goal to improve genomic healthcare for underrepresented communities.
Learning and development for you and us
This is an opportunity for us to learn from you about barriers and opportunities to involving communities and how to mindfully improve our research to be even more beneficial and impactful to affected communities. Likewise, this is also a platform to learn deeply about our research and its implications for you and your community.
We are genuinely excited about the prospect of forming a meaningful partnership with you to develop outstanding engagement initiatives and opportunities. Our intention is to collaborate closely, with the aim of commissioning projects that will empower, support and encourage active participation within your community.
How to express your interest
To express your interest in becoming involved, please provide a brief statement in no more than 500 words outlining:
Your background and why you are interested in creating space for improved awareness and dialogue around genomic medicine, healthcare issues or the medical conditions listed above.
Any prior experience in community engagement or relevant activities such as health advocacy.
Motivation for working with underrepresented groups and promoting health equality.
Your desire to learn more about genetic research and its potential impact.
A suggested proposal for activities we could host together in your community.
There is no deadline for submissions but we encourage you submit your interest as soon as you can. You can submit your expression of interest by emailing us at [email protected].
Genomics England Ambassadors
Ambassadors are also part of the community network. In 2021, we launched a campaign called the 'National Conversation on Genomics'. Its ultimate goal is to create a world that understands the benefits, as well as the consequences, of genomic healthcare so that people can make informed decisions about their lives.
Part of this work involves opening 2-way dialogue with communities where we know health inequalities exist and who are less engaged – if at all – with the concept of genomic health.
To support, we have partnered with representatives of various communities to become Genomics England Ambassadors, to use their powers of engagement for good, working with them to raise awareness around genomic medicine and research across the country.
More information on what it means to be an Ambassador and how to become one will be shared soon.
Our current Ambassadors
Our work so far on engaging with communities
The legacy of language: What we say, and what people hear, when we talk about genomics. This research published in Human Genetics and Genomics Advances reveals the difference between ‘what we say’ and ‘what people hear’ when engaging underrepresented communities around genomics and healthcare. Researchers from Wellcome Connecting Science and Genomics England leveraged framing theory and behavioural science to develop alternate ways to connect with traditionally disengaged audiences and conducted focus groups with 100 people from British communities of varying backgrounds.
The Newborn Genomes Programme Consent Dialogue: Ethnic Minority Community Leaders. This research was conducted to better understand how to design and communicate the Newborn Genomes Programme in a way that is fair and inclusive, removing barriers to participation for expectant parents from five ethnic minority communities.
Ambassadors and their projects:
The Muslim Census report was led by Aman Ali and surveyed 1,007 Muslims living in the UK to understand whether pre-conceptions about muslim's attitudes towards health research and genomics more broadly are based in fact. The aim of this report is for the findings to help explore how to better engage with Muslims to increase Muslim representation in genetic research.
'The Primrose Files' Docuseries, led by Primrose Granville, was filmed in Jamaica. This series was filmed to understand the differences in sentiment between the Black Caribbean and Black African diaspora in the UK versus majority Black communities around the world, and feed these insights into our Diverse Data programme.
A series of TikTok and Instagram videos was created by Dr Amalina Bakri to explain how genetics screening can help patients' diagnosis and treatment.
Get in touch
Join us in driving positive change, fostering genomics understanding and making a real difference to the lives of individuals affected by medical conditions and healthcare issues. Together, we can create a more inclusive and equitable healthcare landscape.