Genomics England partners with the NHS to provide whole genome sequencing diagnostics. We also equip researchers to find the causes of disease and develop new treatments – with patients and participants at the heart of it all.

Our mission is to continue refining, scaling, and evolving our ability to enable others to deliver genomic healthcare and conduct genomic research.

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.

The Participant Panel is made up of a diverse group of people who have consented for their data to be held in the National Genomic Research Library (NGRL). Approved researchers are allowed to access these samples, genomic data, and other associated health data via the Research Environment, a secure, cloud workspace which is sometimes compared to a ‘reading library’: research takes place within it, but the data cannot be taken away.

The Panel advises the Genomics England Board and actively engages in decision-making across other committees and boards, playing a vital role in keeping participants’ interests at the heart of everything Genomics England does.

The Participant Panel represents the interests of the thousands of people whose data is held by Genomics England. This includes the participants in the 100,000 Genomes Project, COVID-19 patients in the GenOMICC study, parents who have joined the Generation Study, and NHS Genomic Medicine Service patients who choose to participate in ongoing research (via the NGRL).

The current membership of the Panel brings direct lived experience as patients or carers of people with rare conditions or cancer, and the perspectives from other cohorts of NGRL participants will be included in due course. The Participant Panel works with Genomics England to ensure that the diverse voices of participants, patients and their families are heard and understood at all levels of the organisation. The Panel demonstrates their impact by strategically influencing the decisions made within Genomics England about who uses their sequenced genomes and associated health data, and what they do with it; and by helping Genomics England to engage with patients, participants, their families and the wider public in mutually beneficial ways.

Overall purpose of the Chair of Participant Panel:

To lead, support and work with other members of the Participant Panel at Genomics England. This includes developing Panel strategy and membership alongside the Vice-Chairs, and with support from Genomics England. The Chair plays a significant role in ensuring that participants’ voices are not only heard but embedded into Genomics England’s work – and further afield where possible. The Chair of the Participant Panel is an influential, key spokesperson and is expected to champion the Panel’s activities and make connections with relevant stakeholders and networks in the genomics, health, and care 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 their responsibilities on a temporary basis, by agreement.

Key responsibilities:

• Chair quarterly Participant Panel meetings: set agenda, coordinate speakers, agree timings, and follow-up actions.
• Correspond with Panel members and provide feedback to Genomics England staff where appropriate.
• Participate in quarterly National Genomics Board and NHS GMS People and Communities Forum meetings.
• Meet with Genomics England’s CEO on a monthly basis and co-chair monthly meetings with the Communications & Engagement team to set agenda and follow up on any actions.
• Present participant viewpoints at conferences and promote the Panel’s work.
• Collaborate with the Panel to write position papers.
• Stay current by reading relevant policy and consultation documents on health data and genomics and attending webinars.
• Attend relevant conferences and training events.
• Interview potential new Panel members and senior Genomics England staff.
• Attend ad hoc meetings with Genomics England staff.
• Share responsibilities with Vice-Chairs, including possible membership of the Access Review Committee as appropriate/by agreement.

Whilst we welcome any suitable qualifications, we are looking for the following list of experience:

• Lived experience with a rare condition or cancer and have consented to share own or a loved one’s data for research purposes in the National Genomic Research Library.
• Commitment to amplifying patient and carer voices.
• Experience in advocating for patients or research participants at a local, regional, or national level is strongly desirable.
• Demonstrable experience in supporting others, such as peers, colleagues or own team.
• Strong project management and organisational skills.
• Demonstrated interest in and understanding of healthcare and the NHS.
• Experience in chairing meetings and effectively representing research participant, patient, and/or carer views.
• Passion for patient and carer involvement in healthcare and research
• Excellent communication skills, with the ability to articulate views clearly and engage with diverse perspectives.
• Strong commitment to promoting principles of equality, diversity, and inclusion.

Time commitment: 

• The anticipated annual time commitment is a core of 24 days with the potential to be renumerated up to 39 days in total (details below). The pattern of regular meetings is as follows:
• Quarterly full-day meetings that occur in March, June, September, and December.
• Participation in quarterly meetings for National Genomics Board and NHS Genomic Medicine Service is required (typically 2 hours each).
• Regular virtual meetings with Genomics England, including the Communications & Engagement team and the CEO, are part of the role.

Remuneration:

• Genomics England pays all of its committee chairs and Non-Executive Directors £7,883 annually for 24 days of work. The Participant Panel Chair may then claim a day rate of £165 per day for up to 16 additional days annually, claimed via expenses.
• Other reasonable expenses are payable, to include:
• Travel, accommodation, and subsistence expenses are reimbursed or covered directly by Genomics England.
• Costs facilitating Chair attendance, such as carer or childcare expenses (by pre-agreement), are also covered.
• General Panel member work, separate from the Chair role, can be claimed as activity payments following the Participant Panel Expenses Policy.
• The Chair needs to maintain a timesheet tracking their time spent on Panel business.

Location:

The Chair can be based anywhere within the UK as long as they can reach London as necessary and within reason. There may be opportunities to travel outside of the UK on occasion. Quarterly Panel meetings take place at the Genomics England office in Canary Wharf (with an option to attend virtually). In general, all other meetings are held virtually.

Eligibility:

Applicants do not need to be a current Participant Panel member.

Applicants must have either donated genomic data to Genomics England’s National Genomic Research Library (NGRL) or have had the consent conversation to do so. This can be their own data, or on behalf of someone else, such as if they are a carer of someone who is part of the 100,000 Genomes Project, or if they are a parent of a child who has donated their data through the NHS Genomic Medicine Service (NHS GMS). 

Current Panel members may apply, provided that they would not exceed a maximum of 9 years on the Panel if appointed.

Term duration:

The Participant Panel Chair is expected to be in post for three years, with a possibility of a three-year extension by mutual agreement, based on the outcome of a 360-degree performance review led by the Engagement and Public Partnerships Director at Genomics England, provided a maximum duration on the Panel of 9 years is not exceeded.

How to apply:

In readiness to apply for the role, you will need to prepare a CV and a personal statement. Your personal statement must outline the following information:

• Why you are interested and consider yourself suitable for the role.
• Reflect the skills we are looking for, which you can find listed under the ‘Experience’ header of the advertisement.
• Please provide information that outlines your eligibility for the criteria described previously under the header 'eligibility'. For ease of reference, this is where we describe that applicants must have either donated genomic data to Genomics England’s National Genomic Research Library (NGRL) or have had the consent conversation to do so. This can be their own data, or on behalf of someone else, such as if they are a carer of someone who is part of the 100,000 Genomes Project, or if they are a parent of a child who has donated their data through the NHS Genomic Medicine Service (NHS GMS). 

We will need to confirm your status in the NGRL as part of this application so please ensure you include the information requested below in your cover letter. Please be assured this information will only be used to check if you or your family member’s data is in the NGRL and will be deleted straight after we have confirmed eligibility.

• How you joined the NGRL, e.g. through the 100,000 Genomes Project, the NHS Genomic Medicine Service or the Generation Study
• 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
• If you yourself did not donate your genomic data (i.e. you consented on behalf of someone else), please let us know their name too

Once you have your CV and personal statement ready, there are two options via which to apply which are listed here:

• Click 'apply' which will take you to the job listing on our career page and then click the button in the advertisement named ‘I’m interested’. You will come to a page where you can provide some personal information, upload your CV and personal statement.

OR

• Email your CV and personal statement  to [email protected] who is our Head of Talent Acquisition. Caroline will upload your CV and personal statement and send you a note to confirm receipt.

Note: Applicants will be subject to vetting, including searching of information in the public domain. Genomics England Privacy Notice: https://www.genomicsengland.co.uk/privacy-policy. 

Indicative timeline to recruit:

Closing date for Applications   30 September 24 at 23:59/11.59pm

Shortlisting decision   Early October 24

Genomics England Interview   October 24

Participant Panel interview   October 24

Call with CEO   October 24

Decision   Late October 24

Start date / induction and onboarding   November 24

Inaugural quarterly full day meeting   5 December 24

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 is contrary to our virtues, undermines our mission and core values and diminishes the dignity, respect and integrity of all parties.