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East Genomics

Patient and public involvement - now recruiting!

We are currently establishing a Patient and Public Voice (PPV) Panel focused on genomic/genetic testing for the East of England and East Midlands.

Now recruiting - initial closing date for application 17 June 2022

The panel will help ensure that the views of patients, carers and families are at the heart of East Genomics informing relevant discussions and decision-making.

This is a brand-new panel, and we are looking to recruit a mix of 6-7 people from across the region who are either patients, carers or members of the public with an interest in genomics.

The panel will be led by a Chair, in collaboration with and with support from the East GMSA Communications and PPV Manager.

About us

East Genomic Medicine Service Alliance (East GMSA) has been set up to ensure all eligible patients across the East Midlands and East of England can access and benefit from appropriate genomic tests when required, providing high-quality and personalised treatment. East GMSA will ensure there is equal access to the nationally commissioned genomic tests set out in the National Genomics Test Directory, no matter where people live or which hospital they use, supporting the establishment of testing pathways for cancer and rare diseases, assisting clinicians in requesting genomic tests and introducing new models of care that support early access to genomic testing.

East GMSA is led by a Partnership Board representative of the four NHS Trust partners that have direct responsibility for delivering the service.

  • Cambridge University Hospitals NHS Foundation Trust
  • Nottingham University Hospitals NHS Trust
  • University Hospitals of Leicester NHS Trust
  • Norfolk and Norwich University Hospitals NHS Foundation Trust.

Working closely with the East Genomic Laboratory Hub (GLH), together with healthcare professionals, networks, alliances, academia and patients and public representatives across the East Midlands and East of England, the East GMSA will bring together the vital multi-disciplinary clinical leadership and other operational and digital functions that are necessary to embed genomic medicine into mainstream clinical care.

The role

The panel will help ensure that the views of patients, carers and families are at the heart of East GMSA, informing relevant discussions and decision-making. The panel will review patient- and public-facing communications, and be involved in pathway development of genomic services in hospitals. The role of the panel will evolve over time, and with that we expect there will be a wider set of engagement and involvement opportunities the panel will be offered.

We are interested in hearing from people with lived experience of undergoing genetic testing – either as a patient, carer or family member – within the last three years. We would also welcome applications from members of the public without experience of genetic testing but with an interest in improvements in the NHS through whole genome sequencing and genetic testing. Familiarity of the way NHS health and social care works, and basic knowledge of whole genome sequencing is crucial for all members of the panel, as is the ability to actively participate in group discussions, advise, and make recommendations.

You will either live in or have received care in the East of England or East Midlands region or have a connection with the area. We are particularly keen to hear from people from marginalised communities, and people from ethnic minority groups. We have already recruited an interim Chair for this patient, public and carer advisory panel.

Time commitment

Meetings will be held every month, for a maximum of two hours per meeting. You will normally be required to read some papers in advance.

There will occasionally be electronic communications and work required between meetings.

It is anticipated this role will take between 0.5 – 1 day per month.

Location of meetings

We are planning all meetings for the remainder of 2022 to be undertaken virtually using Zoom or Microsoft Teams. This is likely to be reviewed in 2023.

Expenses

If/when travel becomes safe again, and physical presence at a meeting apart from the patient, public and carer advisory panel is required, it will be reimbursed. There will always be an option to join virtually.

Remuneration

This is a voluntary role with reimbursement of 'out of pocket' expenses paid. You will be remunerated in accordance with the NHS document, ‘Working with our Patient and Public Voice Partners – Reimbursing expenses and paying involvement payments’ to acknowledge your contribution to the panel. Any involvement payments may be classed as earnings or income by Her Majesty’s Revenue and Customs service (HMRC) or the Department for Work and Pensions (DWP). You would be responsible for declaring this income to HMRC, DWP, Job Centre plus or other agencies as appropriate. If you are in receipt of state benefits, you should seek advice from the relevant agency, for example JobCentre Plus, ideally in advance of applying and certainly before accepting an offer of a role which attracts an involvement payment, even if you intend to decline the payment.

Length of commitment

One year, at which point membership of the panel will be reviewed.

Person specification

Life Experience

Be either:

  • a carer for patients who have accessed NHS services (within the last 2 years)

OR

  • you or someone you care for has undergone genetic testing in the past three years

Skills and aptitude

  • Good communication and influencing skills
  • Ability to form and maintain working relationships
  • Good time management skills

Personal qualities

  • Ability to proactively raise issues in meetings
  • Openness and transparency
  • Takes initiative
  • Conscientiousness
  • Ability to consider multiple perspectives
  • A commitment to the Nolan Principles of Public Life (available at https://www.gov.uk/government/publications/the-7-principles-of-public-life)
  • An understanding of issues relating to equality, diversity and inclusion in healthcare
  • Ability to be objective about one’s own patient or carer experience and use this experience where relevant in order to positively contribute to the advisory panel
  • Appreciation of the complexity of working across organisational boundaries and joint working
  • Lives in or have received care in the East of England or East Midland region or have another connection with the area

Knowledge

  • Some understanding of whole genome sequencing, and issues around genomic testing
  • Awareness of national health and social care issues
How to apply

To apply, please read the following information and then email the following details to Chris.Hind@nnuh.nhs.uk by 5pm on 17 June 2022.

Please tell us a bit about yourself, and your experience – both as a patient/carer if relevant – and why you are suitable for, and interested in, joining this panel (max 400 words). You can either include this information in the body of an email or attach as a Microsoft Word document or PDF. We will acknowledge your application by email.

Those who are shortlisted will be invited to join a virtual (e.g., using Zoom or Microsoft Teams) group interview on a date to be confirmed.