Purpose of the group 

The Genetic Counsellor Registration Advisory Board (GCRAB) has established an accredited register  of practitioners under the Academy of Healthcare Science. The purpose of the GCRAB is to advise  on standards of practice to assure patient and public safety.  

The purpose of the Public and Patient Involvement (PPI) panel is to ensure that the views of patients  and the public and carers are at the heart of the GCRAB. The experiences and lay expertise of the PPI  representatives will inform decisions in the development, operation and regulation of the GCRAB.  

Membership  

The members of the PPI Group will be patient and public representatives who have experience of  living with genetic activity and its management to NHS patients and the public and are independent  of professionals working in clinical genetics. The PPI group chair will also require experience of  sitting on a board or committee. We will endeavour to seek appointment to the PPI group from  individuals from a variety of backgrounds and protected characteristics. 

The PPI group will comprise of the following members;  

1. PPI group chair; appointed by the PPI group members for a term of four years for continuity  of the group’s work and eligible for re-appointment at the end of their period of office.  
2. Decisions about reappointments will be made by the GCRAB; the Chair has no absolute right to be reappointed.
3. Group members; appointed for a minimum period of three years based on lived experiences  and interest in the field of genomics and wellbeing. 
4. Membership will be reviewed after this period and can be extended at the discretion of the GCRAB. Members may decide to withdraw from involvement at their discretion.

As priorities are defined and the strategy of the panel evolves, the potential to increase the size of  the panel may be discussed.  

All members of the PPI group will be asked to declare any interests in writing.  

Time commitment  

The PPI group will be asked to comment on and work on specific defined priority areas as defined  by the GCRAB through electronic communications such as email.

All members will receive an initial induction on the activities of the GCRAB and the PPI Group.  Following this it is anticipated PPI members role will take around 3.5 hours per annual quarter. This  will include a PPI group meeting twice a year virtually for a maximum of 1 hour per meeting. At least  one member of the GCRAB will be present for these virtual PPI group meetings.  

In Addition to this, the PPI Group chair will be expected to attend GCRAB board meetings at least  twice a year and give feedback to the PPI Group on the work of the GCRAB. 

Key areas of responsibility 

Activities of the GCRB PPI group will include but not limited to:  

• Reviewing and commenting on public information literature – occasional reviewing of  GCRAB information e.g. AGM slides, briefing papers  
• Reviewing of the GCRAB website updates, particularly the Public section   Commenting on GCRAB policy decisions  
• Annual review of GCRAB activities including complaints against Registered Genetic   Reviewing on change of Registered professional title, equivalence & statutory regulation,  activities of the GCRAB  
• May require to be on the Fitness to Practice panels  
• Supporting GCRAB research activity 

Reimbursement / Expenses  

PPI panel members will be able to claim reimbursement and expenses in line with standard NHS  England and NHS Improvement policies. PP1 group members are entitled to claim an involvement  payment of £75 per half day of work and £150 for a whole day. This included attendance at GCRB in person meetings, which is often held in London but may be in other parts of the UK.  

Any other necessary funding costs should be submitted in advance to be approved by the GCRAB on  an ad hoc basis. 

Communications / Confidentiality  

Communications between the GCRAB and PPI panel between meetings will be done primarily by  email and, where necessary, virtually using Microsoft Teams.  

PPI Group members consent will be taken to use or share their personal email contact details, where  appropriate, to enable their requests or ideas being shared or discussed between meetings. 

Unless explicitly informed otherwise, it should be assumed that all information discussed in the  meetings (and in any email correspondence between meetings) will be treated as confidential and  should not be discussed outside the membership of the GCRAB Group.  

PPI Group members who do not maintain confidentiality will be removed from the membership of  the GCRAB PPI Group.

References 

NHS England Reimbursing expenses and paying involvement payments policy (2021)  B0869_Working-with-patient-and-public-voice-partners-reimbursing-expenses-and-paying involvement-payments.pdf (england.nhs.uk)