How can patients, family members and the public get further involved?

There are a number of opportunities for patients and the public to get involved with the West Midlands Genomic Medicine Centre. These include:

  • Joining our Patient and Public Involvement panel, which will directly shape the future of the project. Applications are welcome from any participants in the 100,000 Genomes Project, family members/carers of participants, and people who are interested in genomics.
  • Completing a cancer questionnaire, which may change when cancer patients consent to projects.
  • Signing up to our mailing list for regular updates, including our quarterly newsletter.

Consenting Cancer Patients Questionnaire

Are you a cancer patient who has taken part in the 100,000 Genomes Project? We would like to find out when cancer patients feel they should be approached in the cancer pathway.

The results of this questionnaire will be used to inform where in the cancer pathway consent should be taken. This may also assist in the design of future cancer based research projects.

 Join the WMGMC Patient and Public Involvement Panel

The West Midlands Genomic Medicine Centre recently launched a Patient and Public Involvement Panel to help influence and shape the future of the 100,000 Genomes Project in the West Midlands.

The panel will advise on issues like the communication of project updates, and management of results. Some members will also be invited to sit in on other WMGMC meetings, like the monthly Ops and Management meetings.

The members of the panel will ensure that there is always a patient and public perspective in the WMGMC.

Who can be a member of the panel?

Participants of the 100,000 Genomes Project can be on the panel. Parents, carers and family members of people who have taken part are also welcome. We would also welcome applications from those with an interest in genomics.

We would like a diverse panel, from across our 16 Trusts across the West Midlands.

People from all backgrounds and all abilities are welcome – we want people who are willing to discuss their experiences of the project and thoughts for the future.

What will it involve?

The panel will meet several times a year. The meeting’s location will vary, depending on where members of the panel live, to ensure all have a chance to attend in person.

Those who are unable to join meetings in person can join by telephone or Skype. There are likely to be documents to read or consider before any meetings. There may also be follow up work.

Documents and paperwork will usually be sent by email, though post can be arranged.

We hope the panel will shape their own work and define their own responsibilities. All members will be expected to contribute their ideas and experiences to the panel.

Why take part?

The Project is the largest national sequencing project of its kind in the world. It is at the cutting edge of science. This is an opportunity for participants and members of the public to shape the future of genomic medicine here in the West Midlands.

Panel members will help develop the project in the West Midlands, and how genomic medicine is used in the NHS in the future.

Are expenses paid?

Yes. Travel expenses will be covered, with food and drink provided at the meetings. We will provide support and training for everyone on the panel.

How to apply

We have a role description, providing further information here.

If you would like to apply, please complete this application form.

Please contact Kirsten Chalk (0121 371 8161) if you  have any questions about the panel. Please include your name and contact details.

Join the National Participant Panel

Genomics England has an active Participant Panel who’s mission is to help ensure that the interests of participants remain at the centre of the 100,000 Genomes Project. The panel acts as an advisory committee to the Genomics England Board and several members have been invited to sit on other committees within Genomics England, for example the Access Review Committee, the Ethics Advisory Committee etc.

We are currently looking for participants from the West Midlands region to join the panel to help shape the future of the 100,000 Genomes Project. They will do this by:

  • Making sure that the experiences of participants are improved.
  • Responding to feedback.
  • Overseeing who should have access to participant data.

Who can be a member of the panel?

Anyone who has taken part in the 100,000 Genomes Project can be on the panel. Carers of people who have taken part are also welcome. We would like participants from both the cancer and rare disease parts of the Project.

Members should be able to put themselves into other people’s shoes, and see the point of view of other participants as well as using their own experiences.

What will it involve?

The panel will meet twice a year in London. This is likely to be a ½ day meeting. Those who are unable to join meetings in person can join by telephone or Skype. There are likely to be documents to read or consider before any meetings. There may also be follow up work. Documents and paperwork will usually be sent by email.

We hope the panel will shape their own work and define their own responsibilities. All members will be expected to contribute their ideas and experiences to the panel.

Some panel members will also sit on other committees in Genomics England. These include:

Panel members who also sit on these committees will need to attend extra meetings.

Why take part?

The Project is the largest national sequencing project of its kind in the world. It is at the cutting edge of science. This is an opportunity for participants in the 100,000 Genomes Project to shape its future.

The panel will play an vital role in our groundbreaking work. Panel members will help guide this pioneering project and how genomic medicine is used in the NHS in the future.

We want to make sure that ensure the interests of participants are always at the centre of the 100,000 Genomes Project.

Are expenses paid?

Panel members will be paid for their time and reasonable expenses will be covered. We will provide support and training for everyone on the panel.

How to apply

Please download the role description for more information.

Please email Kirsten.chalk@uhb.nhs.uk if you are interested in joining the Panel. In your email, please outline why you are interested in this role. Please also include how you are involved in the 100,000 Genomes Project. Finally, please include your name and contact details.