Participant Panel Member

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

Participant Panel members 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 helps Genomics England consider the needs and priorities of participants in its work, including the processes it adopts as well as the design and delivery of its programmes and services.

They hold Genomics England to account for what it does with participants’ data so that this is being used for public good.

They support Genomics England to demonstrate trustworthiness in practice through its active partnership with people advocating for all participants in the National Genomic Research Library.

Job Description

Key responsibilities

The key responsibilities of members of the Participant Panel are to:

• Contribute to the discussions that take place during meetings from the perspective of someone who has consented for their data, or the data of someone they care for, to be held in the National Genomic Research Library; and reflect the perspectives of the wider community of interest with which you identify (e.g. people with a similar health condition).
• Regularly attend and contribute to quarterly Participant Panel meetings.
• Prepare for meetings by reading and assessing meeting papers.
• Provide written feedback on issues or papers as requested by Genomics England. There may be opportunities to join meetings to discuss them too.
• Undertake agreed tasks between meetings and inform Genomics England if you can’t undertake an action you’ve committed to.
• Subject to Panel members’ individual preferences and at the request of Genomics England, there are also opportunities to represent the Participant Panel on other Genomics England Board Committees or working groups and at events hosted by Genomics England.
• Help ensure that the Participant Panel promotes the inclusion of a wide range of experiences and perspectives.
  
  

Person specification

We are looking for individuals who:

• Are eligible to be on the Panel by virtue of having consented to donate your genomic data, or the data of someone you care for, to the National Genomic Research Library.
• (see below for further details about Eligibility).
• Are passionate about improving healthcare and health research in the UK.
• Are committed to ensuring that the voices of research participant are heard and involved in healthcare and research.
• Have an interest in or experience of patient and public involvement in research.
• Are willing to talk about your lived experience of accessing healthcare and/or taking part in research.
• Have the ability to analyse complex information, for example, Participant Panel papers (with support where needed).
• Are confident sharing your opinions at meetings and can communicate clearly (with support where needed).
• Are organised and reliable, and able to manage different demands on your time for Participant Panel meetings or other activities.
• 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 which is used for sharing meeting papers. Training and support can be provided.

Have an understanding of the importance of confidentiality.

Qualifications

Not applicable.

Additional Information

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 Member

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 Engl

and. 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 now on this advert. You will come to a page where you can answer questions to submit your application. If you apply through the Smart Recruiters system, please ignore the sections Experience and Education. Where you see Resume or CV please do not upload your Resume or CV. Instead, in this section, please upload a word document containing the answers to these questions:

• Why you would like to be a member of the Participant Panel (in no more than 200 words)
• Please share a little about 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)
  
  

OR

• Email your answers to the questions below to recruitment@genomicsengland.co.uk. 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?

Indicative timeline to recruit

Closing date for applications Midnight, 8th March

Shortlisting decision w/c 30th March

Interview w/c 20th April

Decision w/c 27th April

Start date / induction and onboarding from May

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