Patient & Public
Involvement and Engagement

Membership of the PPIE Advisory Group is a voluntary role.  We want to ensure PPI input across all aspects of the Programme, so the PPIE Advisory Group will be invited to:

• Attend PPIE Advisory Group meetings (approximately 4 times per year)

• Provide a PPIE representative to attend the Programme Board meetings.  This role can be shared by several PPI Advisory Group members on a rotating basis.

• Give input into the development of plans and documents for the E-IMMUNE study. This includes the ethics application and the supporting materials for participants such as information sheets and posters.

• Provide patient perspectives to each of the Work Packages and ensure diverse PPIE representation across the whole Programme.  There may be specific pieces of work that the Work Packages ask the PPIE Advisory Group for their input and advice on.

• Contribute to developing a detailed plan for sharing research findings with patients, study participants and collaborators.

• Be involved in sharing and publicising of results throughout the programme of research 

The Group will meet approximately 4 times per year either virtually or at a local venue in Sheffield or Leeds, depending on group preferences. Meetings usually last 1-2 hours.

Participation in the E-IMMUNE PPIE Advisory Group is voluntary and you can choose to withdraw from the group at any time.  The role will last for 2 years in the first instance, but we recognise that members may choose to end their participation sooner due to health or other reasons.

Members of the group will be able to claim a fee for taking part in meetings and related activities. Typically the E-IMMUNE meetings will not require more than 1-2 hours with some preparation time.

The National Institute for Health and Care Research (NIHR) recommends:

• £25 for involvement in a task or activity requiring little or no preparation and which equates to approximately one hour of activity or less (for example, participating in a focus group to provide feedback on a proposal).

• £50 for involvement in a task or activity likely to require some preparation and which equates to approximately two hours of activity

PPIE Advisory Group members are entitled to claim travel and related expenses for attending meetings. Wherever possible and appropriate, travel bookings should be made by the E-IMMUNE team to ensure individuals are not out of pocket whilst expense claims are being processed. Mileage claims will be paid at £0.45 per mile. Further information about what can be claimed and how to claim it will be given if you join the PPIE Advisory Group.

We want the E-IMMUNE study to include a diverse range of participants, from different backgrounds, ethnicities, cancer types, ages and genders.  We want to take special care to prevent patients from minority or deprived communities from being excluded from this research.  If you have any concerns about barriers that may prevent you or others from being involved, please contact us.  We are keen to talk about what we can do to help you or others to be involved.

You should have:

• An ability to offer a patient or family member perspective from a lived experience with immunotherapy cancer treatment.

• An ability to work effectively within a group setting – this includes listening skills

• as well as an ability to make points clearly and succinctly.

• A willingness to attend PPIE Advisory Group meetings and other Work Package or Programme Board meetings, in accordance with your own health and availability.  

We hope that membership of the PPIE Advisory Group will be an enjoyable and beneficial experience.  Support will be available from other members of the study team if you have any questions or need any explanations.

Membership of the PPIE Advisory Group is voluntary.  If your circumstances change, or you have concerns about your involvement, you can resign from the PPIE Advisory Group. We ask that you talk to a member of the E-IMMUNE study team first. They might be able to advise you about any concerns you may have. If you still decide to resign from the PPIE Advisory Group, we ask that you let the study team know, so that a replacement can be recruited.

An existing member of the PPIE Advisory Group, or another member of the E-IMMUNE programme team will talk with you before you first attend a PPIE Advisory Group meeting to give you a background to the work of the PPIE Advisory Group and to address any questions you may have. They will also be available to discuss any concerns or questions at any time during your involvement. 

Talking about your experiences may provoke a range of emotions.  You may wish to find out about organisations that offer support to cancer patients and their families.

• You can find out about local charities and groups on the Macmillan website at: https://www.macmillan.org.uk/cancer-information-and-support/in-your-area?pcode=

• You can also call the Macmillan Support Line for free on 0800 808 00 00 (7 days a week, 8am - 8pm) to find out about local services.

• Macmillan Cancer Support also offers an Online Community which you can join “to share experiences, ask questions, or vent your emotions”.