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East Genomics

Patient and Public Voice (PPV) Panel

Our Patient and Public Voice (PPV) Panel will meet for the first time in September 2022. They will be focussed on genomic/genetic testing for the East of England and East Midlands.

The response to our PPV Panel recruitment has been very encouraging, with lots of great applications received. Following interviews over the summer we are pleased to introduce the first six PPV members, including our Chair Chris Hind.

Interviews for two further panel members have been scheduled and we will update on that when we know more.

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, of 6-8 people from across the region who are either patients, carers or members of the public with an interest in genomics.

The panel is led by our Chair, Chris Hind, in collaboration with and with support from the East GMSA Communications and PPI Lead, Ian Kingsbury.

Meet our PPV Panel

Picture of East GMSA PPV Panel Chair, Chris Hind Picture of Vaila Morrison, PPV Panel member
Picture of East GMSA PPV Panel Chair, Chris Hind
Chris Hind, PPV Panel Chair
Picture of Vaila Morrison, PPV Panel member
Vaila Morrison, PPV Panel member
Picture of Rebecca Middleton, PPV Panel Member Picture of Michele Banton, PPV Panel Member
Picture of Rebecca Middleton, PPV Panel Member
Rebecca Middleton, PPV Panel Member
Picture of Michele Banton, PPV Panel Member
Michele Banton, PPV Panel Member
Picture of Steve Tyler, PPV Panel Member Picture of Tim Row, PPV Panel Member
Picture of Steve Tyler, PPV Panel Member
Steve Tyler, PPV Panel member
Picture of Tim Row, PPV Panel Member
Tim Roe, PPV Panel Member (picture tbc)
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.

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