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Participant involvement in the STRAVINSKY study

What is a Participant Involvement Panel (PIP)? 

A Participant Involvement Panel, or PIP for short, is an active partnership between the study participants with the researchers and study management team that influences and shapes the research and study delivery. 

Purpose of the panel  

This panel will support the Stratification of Clinically Vulnerable People for COVID-19 Risk Using Antibody Testing (STRAVINSKY) study to ensure we are conducting research that is relevant, suitable and valuable for patients. Patient and participant involvement is particularly important in the evolving COVID-19 environment and we are keen to ensure participant feedback is heard and considered within the research project.  

The aims of the PIP will be to advise and guide STRAVINSKY researchers through providing open, honest feedback and reflections on the research priorities as well as perspectives and thoughts on implications of the research on the wider public and in the context of other emerging COVID-19 research and policy.  

Membership 

The STRAVINSKY study will bring together a diverse cohort, including people with a weakened immune system and a range of conditions, from a range of age groups, genders, ethnicities and locations. We are keen for the PIP to represent a diverse group of voices to better reflect the variety of experiences encountered by our participants. We’re looking for six participants to join the panel. 

  • Membership is based on the STRAVINKSY participant criteria, including people with cancer, autoimmunity, immunodeficiency, solid organ transplant, liver cirrhosis, inherited blood disorders, HIV, chronic kidney disease, diabetes, MS, Parkinson’s disease, heart failure and bone marrow transplant. Members will be active participants in the study.  
  • Membership will ideally be for the two-year duration of the STRAVINKSY project
  • Members must have access to the internet and an accessible device to attend virtual meetings via Zoom and an email address for communications. We will strive to make meetings accessible for everyone who wishes to participate, for example offering an option of calling people into Zoom meetings. 

Responsibilities 

Panel members will: 

  • Attend meetings and read any documents sent in advance. 
  • Play an active, constructive and co-operative role in meetings.  
  • Respond with comments on documents by the requested dates. 
  • Remain inclusive of the views of all study participants. 

Ways of working 

The panel will meet five times over two years. Meetings will be held virtually on Zoom with whole group discussions. It is estimated each meeting will not exceed 2 hours. Members may be contacted between meetings via email for advice/input should the need arise.  

The British Society for Immunology will support panel members in their role and provide secretariat for the panel, organising and chairing meetings, circulating papers and sharing information and resources through email. PIP members will follow the BSI code of conduct during their time on the panel and all involved in the panel will maintain confidentiality of the STRAVINSKY study within the project team. 

Recognition 

Panel members will be remunerated in recognition for their work and service. The honorarium offered will be £50 per meeting. 

For any questions, please contact Hana Ayoob, BSI Patient and Public Involvement Manager at h.ayoob@immunology.org