Working with participants, patient groups and the public

We are working with patients, patient groups and charities, patient and public involvement (PPI) groups and participants throughout Genomics England and the 100,000 Genomes Project. We also have a programme of public events and debates.

Get Involved

In your area

There are opportunities to get involved across England. Read about whats going in the East of England, Oxford, or contact your NHS Genomic Medicine Centre to find out more.

Participants

If you’re taking part in the 100,000 Genomes Project, you can join our Participant Panel to help shape the Project’s future. Or contact your NHS Genomic Medicine Centre to find out about activities near you.

Participant stories

We are very grateful to everyone who has shared their stories with us or the media. Watch our participant videos or read Anthony’s blog ‘Patients Know Best?’.

Events, debates and talks

Our programme of events for everyone interested in the 100,000 Genomes Project.

Our work so far

Working with patients

Patients and their carers were involved in developing our consent literature and many of their comments and suggestions are included in the documents. In particular, our young people’s literature is almost entirely the work of the group we consulted.

Patients, carers and the public, including black and minority ethnic groups also helped us shape our infographics and information for the public about the project. The reports of our consultations are below.

From the outset of the project, patient representatives have played an important role in our Ethics Advisory Committee. This committee shapes the ethical policies of the project, oversaw development of consent literature and initiates and develops work programmes (for instance one on inequalities and diversity) which include further patient involvement.

Patient and Public Involvment (PPI) Network

Each of the 13 NHS Genomic Medicine Centres have established PPP (patient and participant participation) or PPI groups and has a PPI lead for this project. The PPI leads work together with representatives from Genomics England and NHS England in a national GMC PPI network. Currently the PPI network is working on:

Feedback on the patient information literature and consent process.
A structured evaluation of the consent process for the Project.

Participant Panel

We are recruiting members for a Participant Panel. Members include participants in the project and their carers. See our Participant Panel page for more information and details of how to apply.

The panel reports directly to the Genomics England Board, through its Chair. One of the most important responsibilities of the Participant Panel is to assure the data access process (who gets to look at participant data). Their aim is to help ensure that the interests of participants remain at the centre of the 100,000 Genomes Project. Members of the Participant Panel also sit on our Access Review Committee, GeCIP Board and Ethics Advisory Committee.

Patient Groups

Patient groups have an important role to play in the Genomics England Clinical Interpretation Partnership (GeCIP) domains . This partnership brings together many researchers collaborations to advance the knowledge and understanding of disease. Each domain includes patient representation.