What is the Central and South Genomics PPI group?
The Central and South Genomics Patient and Public Involvement (PPI) Group is a group of dedicated and enthusiastic individuals with experience in genomic testing and diagnosis, whether through their own experience or through caring for another person.
This group of experts by experience inform and advise Central and South Genomics on the introduction of genomic medicine into routine NHS care. Genomics has the potential to transform healthcare, and we want to ensure that we involve and consult with members of the public at every level of our work.
The PPI group play a crucial role in the development of the Genomic Medicine Service in our region. Panel members work closely with members of the C&S Genomics to develop and improve the service, and inform how genomic medicine is provided across NHS Trusts in our geography.
The panel helps bring the views of NHS users, family members and carers to the forefront of C&S Genomics policy-making. Topics to be addressed are agreed by members of the panel and include reviewing patient and public-facing communications, C&S project proposals, as well as acting as an ambassador for genomics and genetic medicine in the NHS.
Hear more about the PPI group from Cara Duffy, who tells her daughter Ellana’s story as well as her motivation for joining:
How does it work?
Meetings are held quarterly. Between meetings, panel members may be asked to work on activities raised at the meeting, with email communication and the reading and reviewing of documents likely. This is likely to mean a total commitment of 5-10 hours per month. Panel members will be requested to commit to a minimum of one year initially.
Training will be provided to panel members. This may vary depending on panel members previous experience of patient and public involvement.
This is a paid role, with the panel adhering to the National Institute for Health Research’s payment guidance for PPI work, with payment for people’s time and attendance at meetings.
Please note that 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.
How can I join?
We are keen to hear from people with lived experience of genetic testing within the last three years. This could mean you have personally had genetic testing, or perhaps a family member or carer has. Genetic testing may have been for cancer, a rare disease or COVID-19. Expressions of interest are also welcomed 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. Recent use of the NHS and some knowledge of genetics and genomics would be welcomed.
Panel members will be expected to live in the Central and South region, which includes the West Midlands, Thames Valley and Wessex.
We are particularly keen to hear from people from diverse communities and people from all ethnic groups, [1] and by those who historically have not been involved.
[1] GOV.UK 2021 Census of England and Wales: Asian or Asian British; Black, Black British, Caribbean or African; Mixed or multiple ethnic groups; White; Other ethnic group
https://www.ethnicity-facts-figures.service.gov.uk/style-guide/ethnic-groups [Accessed 16 September 2022]
To apply, please email [email protected].
In your email, please tell us a bit about yourself and your genomics experience. Please tell us why you are interested in joining this panel. People who are shortlisted for the panel will be invited to attend an informal virtual interview.
Person Specification
Please note that although all aspects of the personal specification are desirable, applications will be welcomed from individuals who do not meet every criteria.
- Lived experience of genetic or genomic testing in the last 3 years
- Live in Central and South geography (West Midlands, Oxfordshire or Wessex)
- Enthusiastic about genomics, genetics, and its potential to transform healthcare
- Good communication skills
- Commit to respecting patient confidentiality
- Ability to raise issues proactively in meetings and consider other views