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.
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.
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.
Many participants have shared their stories with us – either for the media or for films for this site. We are very grateful to everyone who has helped us by talking about their experiences.
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.
We have a public engagement programme including a number of events around the country. See our events pages for the latest details.
The following links open as PDF documents.
- Earning Trust: Public Engagement and Patient Involvement Strategy 2015-17. Genomics England
- Potential Participant Literature: Research Report November 2014. RandallFox
- What do patients with rare genetic conditions think about whole genome sequencing in the NHS? Research Findings for the 100,000 Genomes Project November 2014. Genetic Alliance UK
- Ethical issues relating to involvement of cancer patients in the 100,000 Genomes Project. Qualitative Research Findings October 2014. GfK NOP
- Research on Genomic Data Sharing. Qualitative research report September 2014. Solutions Research.