Participant Panel Vice-Chair for Cancer

Genomics England is a global leader in enabling genomic medicine and research, focused on creating a world where everyone benefits from genomic healthcare. Building on the 100,000 Genomes Project, we support the NHS’s world-first national whole genome sequencing service and run the growing National Genomic Research Library, alongside delivering numerous major genomics initiatives. By connecting research and clinical care at national scale, we enable immediate healthcare benefits and advances for the future.

Our mission is to provide the evidence and digital systems so that by 2035 genomics could play a role in up to half of all healthcare interactions, whilst securing the UK’s position as the best place to discover, prove and benefit from genomic innovations.

We are accelerating our impact and working with patients, doctors, scientists, government and industry to improve genomic testing, and help researchers access the health data and technology they need to make new medical discoveries and create more effective, targeted medicines for everybody.

Behind the Healthcare and Research outcomes, Genomics England delivers through designing, developing and operating complex healthcare software systems.

We're on the cusp of big changes with the real prospect of genomics becoming the fabric of everyday healthcare through the lifetime – from birth to old age.

The Participant Panel is a key advisory group for Genomics England. It represents the voices and experiences of people who have agreed for their data, or the data of someone they care for, to be held by Genomics England in the National Genomics Research Library and used for research.

Being part of the Participant Panel offers people a fantastic opportunity to help guide and advise Genomics England as the custodian of participants’ data, ensuring that the exciting potential of genomics research is realised to improve healthcare for people throughout their lives.

Overall job purpose 

As the Vice-Chair, to provide leadership to the Participant Panel, supporting the Chair, to:

• represent the interests of people who have consented to donating their own data, or the data of someone they care for, to Genomics England's National Genomic Research Library. This means helping Genomics England consider participants’ needs and priorities in its work, including the processes it adopts and the design and delivery of its programmes and services.
• hold Genomics England to account for what it does with participants’ data so that this is being used for public good.
• support Genomics England to demonstrate trustworthiness in practice through its active partnership with people advocating for all participants in the National Genomic Research Library.

The Vice-Chair for Cancer has particular responsibility for advocating for participants who have donated their data – or the data of someone they care for - to the National Genomics Research Library following a cancer diagnosis, while also helping Genomics England anticipate and address the needs of people who may be diagnosed with cancer and offered the chance to donate their data in the future.

The Vice-Chair for Cancer will also support the Chair to:

• agree Participant Panel priorities and the Panel’s involvement in Genomics England’s work.
• oversee delivery of the Participant Panel’s strategy.
• promote the Panel’s activities, making connections with relevant stakeholders and networks in the genomics, health, and health research sectors.

Genomics England understands the very nature of being a Panel member means that there may sometimes be personal commitments that need to be prioritised. In such circumstances, the Chair and Vice-Chairs may share some of their responsibilities on a temporary basis, by agreement.

Key responsibilities

Working collaboratively with the Participant Panel Chair and Vice-Chair for Rare Conditions:

• Help to shape the agenda of the quarterly Panel meetings, with a particular focus on ensuring the needs and priorities of participants with cancer are represented in these discussions.
• Attend the quarterly Panel meetings and monthly Panel leadership meetings with Genomics England and follow up actions where applicable.
• Support Panel strategy and priority planning.
• Represent all participants in the National Genomic Research Library and support ongoing communication with this community, with a particular focus on participants with cancer.
• Support project-based activities on priority areas with Genomics England, attending meetings where required to enable this.
• Answer enquiries from Genomics England, Panel members and participants.
• Present at, or represent the Participant Panel at, conferences as requested by Genomics England on participant viewpoints of genomics, health and health research, and promoting the role of the Panel.
• Deputise for the Chair as needed and/or requested and share responsibilities with the Chair and Vice-Chair for Rare Conditions, as appropriate.
• Interview potential new Panel members and candidates for key Genomics England roles who support the Participant Panel, on request.

Person specification

We are looking for individuals who: 

• Have personal experience of cancer, either through their own diagnosis or by caring for someone with cancer, and have consented to whole genome sequencing and to donating their data – or that of the person you care for – to the National Genomic Research Library, via the 100,000 Genomes Project or the NHS Genomic Medicine Service.
• Are passionate about improving healthcare and health research for people with cancer.
• Have experience of advocating to ensure that the voices of research participants are heard and involved in healthcare and research.
• Are willing to talk about your experience of accessing healthcare and/or taking part in research.
• Are able to lead discussions amongst people with diverse perspectives to reach consensus.
• Have the ability to analyse complex information, for example, Participant Panel papers (with support where needed).
• Are organised and reliable, and able to manage different demands on your time for Participant Panel meetings or other activities.
• Have experience of preparing for and conducting meetings, following up on issues, and representing the views of people and/or carers in meetings.
• Are confident sharing your opinions at meetings or at events with different groups of people, including national organisations.
• Are able to put across your views and the views of others clearly, constructively, and sensitively.
• Listen to different perspectives with respect and empathy.
• Understand, and are committed to, principles of equality, diversity, and inclusion.
• Have a familiarity with video conferencing as some meetings are held virtually; training can be provided if required.
• Are willing to use Microsoft Office, including Microsoft Teams for meetings held online, and SharePoint for sharing meeting papers; training and support can be provided.
• Have an understanding of the importance of confidentiality.

Not applicable. 

Closing date for applications - Sunday 8th March at midnight

Further information

For information regarding time commitment, location, remuneration, term duration and training and support and further information regarding the Genomics England please read this: Candidate recruitment pack Participant Panel Vice-Chair for Cancer

Eligibility to apply

Applicants must have had the consent conversation to donate their genomic data, or the data of someone they care for, to contribute to research happening in the National Genomic Research Library. In some instances, you may not have received a diagnosis or further information about your healthcare condition.

Genomic data is data that has been collected from whole genome sequencing tests. People may have had their genome sequenced through a genomic test in the NHS or been part of a research study led by Genomics England or a partner of Genomics England. People who have received a whole genome sequencing test will have been asked if they consented for their data to be added to the National Genomic Research Library.

If you have consented on behalf of someone else, this may have been as the carer of someone who is part of the 100,000 Genomes Project or the NHS Genomic Medicine Service, or as the parent of a child who is participating in the Generation Study.

Genomics England will check applicants' status in the National Genomic Research Library. After you submit your application, with your permission, Genomics England’s Service Desk will contact you to ask you to provide the information requested below to enable this. This could be for yourself or for the person you care for, if you consented on their behalf.  

• Your NHS number, or the NHS number for the person you have consented for
• Your date of birth, or the date of birth of the person you have consented for
• How you or the person you care for joined the National Genomic Research Library, e.g. through the 100,000 Genomes Project, the NHS Genomic Medicine Service, the Diverse Data Initiative or the Generation Study

Please be assured this information will only be used to check if your data or the data of the person you care for is in the National Genomic Research Library.

How to apply

There are two options via which to apply which are listed here:

• Click apply on this advert. You will come to a page where you can answer questions to submit your application. If you apply through the system, please ignore the sections Experience and Education. Where you see Resume please do not upload your Resume or CV, we are basing your application solely on your answers to screening questions. Instead, in this section, please just upload a word document with your full legal name including title, any phone numbers and email addresses you are contactable on.

OR

• Email your answers to the questions below to [email protected]. A member of the team will upload your answers to our recruitment system and send you a note to confirm receipt.  

Candidates will be asked to provide the following information in their applications:

• Do you hold the current right to work in the UK?
• Please give details of your current right to work – type and length.
• Will you in the future need a visa or work permit in order to work in the UK?
• Have you given consent for your data to be held within the National Genome Research Library (NGRL) or have given consent for someone you care for?
• Please confirm you consent for your name, email address and phone number you have provided on your application to be shared with Genomics England Service Desk team. The Service Desk team will contact you to ask for personal information outlined in the Candidate recruitment pack linked in the advert, that is needed to check that you or, if you have provided these details instead, someone you care for are included in the National Genome Research Library (NGRL). If Service Desk need to contact you for more information, they will need your response by 11th March.
• Why you would like to be the Vice-Chair for Cancer of the Participant Panel (in no more than 200 words)
• The skills and experience you would bring to the role. This could be from past work, volunteering, or other life experiences (in no more than 200 words).
• Why you think representing the views of participants is important in genomic research and for Genomics England and how you would enable this as Vice-Chair for Cancer (in no more than 200 words)
• Reasonable adjustments can be requested at interview stage if you have a disability or long term health condition which may impact on your ability to perform at an interview. Each adjustment requested is dependent upon your condition and how this would affect you in an interview. Please indicate if you would like to discuss a reasonable adjustment.

Indicative timeline to recruit

Closing date for applications Midnight, 8th March 

Shortlisting decision w/c 30th March

First interview w/c 13th April

Second Interview w/c 27 April

Decision w/c 4th May

Start date / induction and onboarding from May onwards

Genomics England Research Summit 23rd June

Inaugural quarterly full day meeting 24th June

Equal opportunities and our commitment to a diverse and inclusive workplace 

Genomics England is actively committed to providing and supporting an inclusive environment that promotes equity, diversity and inclusion best practice both within our community and in any other area where we have influence. We are proud of our diverse community where everyone can come to work and feel welcomed and treated with respect regardless of any disability, ethnicity, gender, gender identity, religion, sexual orientation, or social background. 

Genomics England’s policies of non-discrimination and equity and will be applied fairly to all people, regardless of age, disability, gender identity or reassignment, marital or civil partnership status, being pregnant or recently becoming a parent, race, religion or beliefs, sex or sexual orientation, length of service, whether full or part-time or employed under a permanent or a fixed-term contract or any other relevant factor.  

Genomics England does not tolerate any form of discrimination, harassment, victimisation or bullying at work. Such behaviour undermines our mission and core values and diminishes the dignity, respect and integrity of all parties. Our People policies outline our commitment to inclusivity. 

We aim to remove barriers in our recruitment processes and to be flexible with our interview processes. Should you require any adjustments that may help you to fully participate in the recruitment process, we encourage you to discuss this with us. 

Culture

We have four key behaviours that represent what we would like Genomics England to feel like and the culture we want to encourage, in order for us to achieve our mission. These behaviours help us all work well together, deliver on our outcomes, celebrate our successes and share feedback with each other. You can read about these and other aspects of our culture here Culture | Genomics England