We have embedded patient and public involvement within our global governance for the HPRU to ensure the patient and public voice can impact on our research strategies, projects and function.
Patient and public involvement:
Excellent progress with Patient and Public Involvement (PPI) has continued with the establishment of our Patient and Public Involvement Panel as per objectives 1 and 2 of our PPIE Strategy 2015-17. The panel will be a strategic PPI resource available to all members of our HPRU to provide them with continuous support and assistance with PPI and ensure our research is shaped by the patient and public voice. The Panel has been set up and is chaired by our HPRU-funded PPI/PE Lead Aime Boakye with support from the NIHR Imperial Biomedical Research Centre (BRC)/HPRUs Patient and Public Involvement Officer, Maria Piggin. Further details about the Panel are set out below. The NIHR Imperial BRC has offered a number of training opportunities throughout the year to improve awareness and understanding of PPI and Public Engagement for researchers and public representatives through training and resources which have been well-attended by our HPRU. The NIHR HPRU in Respiratory Infections continues to have strong partnerships with collaborators and 3rd sector organizations such as TB Alert and Doctors of the World.
International Scientific Advisory Board Lay Representatives
Since Michael Goold, our lay and International Scientific Advisory Board (ISAB) chair, has been inactive this year, we invited an additional Lay Member to join our ISAB, Zoe Portlock, who is Director of Services at the Bromley-by-Bow Centre. The Bromley-by-Bow Centre is an innovative community organisation in east London, working in one of the most deprived boroughs in the UK. They support families, young people and adults to learn new skills, improve their health and wellbeing, find employment and develop community-wide resilience. The Centre is recognised by PHE as a leading UK model for delivering sustainable health and addressing health inequalities, particularly in immigrant communities and Prof Lalvani, our HPRU Director, is the Chair of the Centre’s Board. We are delighted that Zoe has joined our HPRU ISAB and will input into our future research strategy and projects.
Public Involvement in Live Attenuated Influenza Vaccine (LAIV) Study Recruitment
Two work experience students joined us at the TB research centre from the 27th June 2018 for a week where they created a poster for the LAIV study to help recruit an unvaccinated group of study participants in the second year of the study. 17 students were subsequently enrolled into the unvaccinated group.
Patient and Public Panel
The NIHR HPRU in Respiratory Infections strives to ensure that the patient and public voice impacts our research priorities, strategies, projects and functions making sure our research is accountable, transparent and relevant to the public. Therefore, we have recruited a panel of patients and members of the public to help us identify, plan and design our research across all of our research themes. The panel currently consists of 7 patients affected indirectly or directly by Respiratory Infections and members of the public both with and without previous experience of PPI. We are endeavouring to recruit additional members with TB specific experience as this area of respiratory infections is not currently well represented on the Panel. We held our first panel meeting on 23 January 2017 which included undertaking an audit of PPI training needs of the members in order that we can address these in future meetings. Together with Panel members, we co-designed a Terms of Reference document (including a detailed Role Description) which governs the Panel. Panel meetings were held in June and October 2017. Since the establishment of the Panel, we have had support from various Panel members to assist with two research projects.
1) Two members of the panel (one experienced in PPI and one not experienced in PPI) have reviewed patient information leaflets and consent forms to aid the recruitment and continuation of our TB diagnostics theme.
2) Two Panel members (one experienced in PPI and one not experienced) have reviewed an information leaflet for use in PPI interviews with patients who have previously been treated for Multi Drug Resistant (MDR) TB. These interviews helped support an application for the MDR TB clinical, social and financial prospective cohort project. We intend to work with our Patient and Public Panel to initiate a variety of project-specific methodologies for measuring the impact of our PPI work. This is a new proposed objective in our PPIE Strategy 2017-19. We will also ask the Panel to review and update our existing PPIE Strategy 2015-17 so that it captures our aims and objectives to the current end of our HPRU funding in March 2019. Members of our Patient and Public Panel are rewarded for their contribution in accordance with the NIHR Imperial BRC Rewards, Payment and Recognition Guidance for Patient and Members of the Public involved in Research. Members were recruited to this Panel through our Twitter handle and by way of advertisement on the “People in Research” website.