Role Profile for Patient and Public Representatives in GeCIP Domains
At Genomics England and through the 100,000 Genomes Project we work with patients, patient groups, charities, patient and public involvement (PPI) groups and participants. PPI Representatives have an important role to play in the Genomics England Clinical Interpretation Partnership (GeCIP). The GeCIP brings together researchers collaborating to advance knowledge and understanding of disease and the genomic data of patients and participants. In involving PPI Reps in the work of GeCIP members, we aim to:
- Pursue a common purpose of providing patient and public perspectives throughout the research process
- Meet Genomics England’s commitment to put these perspectives at the heart of our activities
- Directly involve patients and carers at all stages of our work
This document sets out essential and desirable attributes for GeCIP patient representatives, and outlines their anticipated roles and responsibilities.
|Role||To act as a PPI Rep (Patient and Public Involvement Representative) of a GeCIP domain|
|Duration||1 year initially, to be extended automatically by mutual agreement unless otherwise indicated, for as long as the domain is actively undertaking research under Genomics England Access Review Committee and Science Advisory Committee approval|
|Expenses||To be provided for the activities in this role description,unless reimbursed from another PPI funder|
|Linked Documents||See also: guidance documents for GeCIP Leads and for PPI Reps, respectively|
PPI Reps shall contribute to the activities of the GeCIP domains through1:
Discussion with the domain lead or the domain as a whole at least twice a year
- Acting as a two-way link between researchers and patients, while representing people like themselves, rather than their own individual interests
- Advising on proposed research from a patient perspective, providing input at any stage
- Proactively stimulating research ideas and representing a range of patient perspectives to researchers in the domain
- Helping to write lay summaries and other public-facing materials
- Acting as a point of contact for compiling PPI sections in funding applications made by the domain
Essential characteristics for PPI Reps:
- Direct lived experience, either as a patient or carer, relevant to the domain
- Good communication skills – speaking, listening and writing
- Good organisational and time management skills
- Basic IT skills and access to and ability to use MS Office tools and email
- Ability to work independently and in a team
- Ability to represent views other than your own
- Ability to respect the confidential nature of the information they encounter
- Willingness and ability to familiarise themselves with relevant research, including by asking questions to clarify the GeCIP’s activities, challenge researchers or better understand the research
- PPI reps must not be employed by any company who would gain a significant commercial advantage by virtue of their involvement with the GeCIP domain
Desirable characteristics PPI Reps:
- Access to communications media (Skype / WebEx)
- Participating in the 100,000 Genomes Project or the NHS Genomic Medicine Service (as participant,patient or carer)
- Established links with relevant patient and/or research organisations
- For cancer GeCIP domains, a broad understanding of cancer research structures and processes in the UK, in particular the links between genomic analysis and clinical trials in cancer research
PPI Welcome Pack
We have prepared a welcome pack which gives an overview of the relevant information for PPI representatives in GECIP.
Term of Office & Time Commitment
- PPI Reps are invited to commit to the role for one year initially, for as long as the domain is actively undertaking research under Genomics England Access Review Committee and Science Advisory Committee approval. This would be extended automatically by mutual agreement between the GeCIP domain lead and the rep, unless indicated otherwise by either.
- At a minimum, Genomics England ask PPI Reps to commit half a day of their time, twice a year
- The PPI Rep and the GeCIP domain lead are jointly responsible for informing the Genomics England GeCIP Team of changes in the Term of Office for PPI Rep appointment.
Declaration of interests
All GeCIP PPI Reps are required to declare any actual, potential or perceived interests that might be in conflict with the work of the GeCIP domain of which they are a member ( including the above-mentioned1), as they arise.
In line with Genomics England’s commitment to equal opportunities, PPI Reps should be selected purely based on their ability to fulfil the role and contribute to the GeCIP and not be discriminated against on the basis of their age, colour, disability, ethnic or national origin, marital status, race, sex, sexual orientation or religion or belief. Please contact gecip-[email protected] with any concerns or if you require any reasonable adjustments in order to apply to be or continue to be a PPI Rep.
1Appropriate support will be offered, as detailed in the accompanying guidance documents ([insert exact name])