PPI Panel Meetings

Each Patient and Public Involvement panel meeting held by UK-CIC will be listed below, along with a summary of each meeting. For further information, please contact Erika Aquino.


July 2021

The Patient and Public Involvement (PPI) panel met virtually in July for their penultimate meeting, packed full of interesting presentations and discussion. Vivienne was a skilled co-chair finding the right balance between keeping the meeting moving and giving everyone time to voice their thoughts.

Sam Wilson, a UK-CIC Theme 5 researcher from Glasgow was first to present to the panel. He spoke about his research investigating genes that can inhibit the replication of SARS-CoV-2, with a particular focus on a gene called OAS1 which is found to be important in determining COVID-19 patient outcome. In the Q&A that followed, the panel sought to understand the influence of OAS1 relative to other factors that we know affect COVID-19 disease course. They also highlighted the importance of making international links and studying non-European populations to further clarify the role of the gene.

The panel then heard from Aamnah Rahman, a researcher from Born in Bradford (BiB) who is involved in community engagement and development within the project. The BiB study has adapted in response to the pandemic to collect data around how COVID-19 is affecting and spreading within communities in Bradford, which is being used within UK-CIC. Aamnah described the different research panels within BiB and discussed the importance of community engagement within the project. She spoke about the different methods through which they  reach the many different communities in Bradford mentioning social media, local radio, local magazines and translated resources as important platforms. The panel commended the project and the efforts that have been made to involve the community in research suggesting that similar models should be replicated across the UK.

Peter Openshaw, UK-CIC Co-Chair, was also in attendance at the meeting. He discussed how immunology research has benefitted the pandemic effort and the public as a whole. He highlighted how we now understand much more about SARS-CoV-2, why and how it makes people so sick and said that through a huge group effort across the immunology community we have developed effective vaccines and treatments at incredible pace.

At the end of the meeting, the panel discussed the progress of an academic paper that will be published around the impact of PPI within UK-CIC for which some panel members are co-authors. The panel also suggested some potential topics for discussion at the final August meeting. As usual, feedback was given through Padlet and these comments, as well as those from previous meetings will be reflected upon in the meeting next month.

Thank you to all the PPI panel members for their contributions and time at the meeting.

 


June 2021

The Patient and Public Involvement (PPI) panel met virtually in June for a two-hour meeting. Bob was an excellent co-chair ensuring the attendees moved through the busy agenda smoothly while allowing time for dialogue.

Erika Aquino led a discussion at the start of the meeting with the panel on what they perceived to be both the challenges and successes of PPI within UK-CIC. The panel expressed how much they have valued being able to share information and resources from the consortium with their communities. The outputs from this conversation were captured for the final evaluation reports which will be co-authored at the end of the project alongside members of the PPI panel.

The June meeting had three scientific presentations from different research areas across UK-CIC. Lynn Molloy and Laura Rivino who both work on the Avon Longitudinal Study of Parents and Children (ALSPAC) presented to the panel giving some background on the ALSPAC study, how it is interacting with UK-CIC, and the impact this research is having. In the Q&A with the panel, there was further discussion on how ALSPAC was founded and the importance of collecting data on ethnicity was highlighted.

Dimitris Lagos, a UK-CIC Theme 1 researcher gave the panel a detailed insight into his work in understanding what drives COVID-19 progression in hospitalised patients. He explained how his research will hopefully guide more personalised treatments for COVID-19 patients.

In the final part of the meeting, Alex Richter a researcher from UK-CIC Theme 2 presented an update on her work investigating the unexplained symptoms of COVID-19. She described to the panel how her team is investigating the possibility of COVID-19 triggering an autoimmune process (when the immune system attacks itself) in patients. In the Q&A that followed the panel advocated for stronger links between basic scientific research and the wellbeing and emotional support of patients.

As usual, the PPI panel used the online platform Padlet to give their feedback on the meeting, which continues to be very valuable.

Thank you to all the panel members for their contributions and time at the meeting.

 


May 2021

The Patient and Public Involvement (PPI) panel met virtually in May for a jam-packed meeting that was expertly co-chaired by Tony. This meeting differed in structure slightly - in place of a scientific presentation from UK-CIC researchers there was a focus on perspectives from the UK-CIC Advisory Board and on public engagement around immunology.

The panel welcomed Sheena Cruickshank, UK-CIC Advisory Board member, to the meeting. As well as being a prominent immunologist, Sheena is also a public engagement professional. Sheena gave an interesting presentation that explained her journey into immunology and how she engages with the public around her research. She spoke about her work on raising health awareness through community engagement and about a citizen science project she works on called Britain Breathing (you can read more about the project here). The panel were impressed by her work and appreciated her approach of reaching beyond the lab to involve local communities in research.

Peter Openshaw, UK-CIC Co-Chair and lead for the ISARIC4C workstream attended the meeting to update the panel on progress. Peter described how they have collected data on more than 207,000 patients with COVID-19 to date (representing over 40% of people in the UK who have been hospitalised with COVID-19) which is being used to carry out studies on the effects of factors like age, obesity, ethnicity, prior medication and different co-morbidities on disease severity.

Arne Akbar, UK-CIC Advisory Board chair had a discussion with the panel on the role of the Advisory Board and how it connects the Management Board, which manages the research, and the PPI panel. Arne described how contributions from the PPI panel have become more and more appreciated and that the success of PPI within UK-CIC has generated huge interest in the immunology community. Panel members highlighted the importance of capturing the impact the panel has had within UK-CIC and discussed some ways this could be achieved.

In the last part of the meeting Jennie Evans, Director of External Affairs at the BSI, thanked the panel for their great participation in the UK-CIC virtual scientific conference. The PPI page which you can find here has been updated to include a section collating all of the resources made as part of the conference. Jennie discussed some of the post conference feedback including the good proportion of attendees who engaged with either the PPI chatrooms or PPI poster and how Tony’s speech emerged as a favourite when delegates were asked to name their conference highlight. The panel then gave their feedback on how their experience of the conference was.

Thank you to all the PPI panel members for their contributions and time at the meeting.

 


April 2021

The Patient and Public Involvement (PPI) panel met virtually in April for a meeting that was packed full of stimulating conversation. With Htay as co-chair, everyone had an opportunity to ask questions and voice their thoughts.

Paul Klenerman and Susie Dunachie, UK-CIC Theme 2 leads, joined the meeting to give an update on their research and how research questions have been adjusted to investigate the immune responses to vaccines as well as natural infection. Paul described how they have been analysing how long immune responses last after natural infection and vaccines, if this immune response is protective against reinfection and if it is affected by emerging variants. A lively discussion with the PPI panel followed where the critical importance of collecting ethnicity data in research emerged as a key point. The PPI panel also described how some patient groups had been left concerned by the extension of the dosing schedule and stressed the importance of dedicated research on the immune response to vaccines in these patients. Bob and Tony, the two PPI representatives who sit on the Advisory Board, will ensure that important comments from the April meeting are reported back at the next Advisory Board meeting.

Paul Moss, UK-CIC Co-Chair, was also in attendance at the meeting. He discussed the encouraging results from his recent pre-prints that investigated responses to vaccines in older people in both care homes and the community. You can find these papers in our publications section here.

The panel then heard from Jennie Evans, Director of External Affairs at the BSI, who thanked them for all their hard work to prepare for activities around the UK-CIC virtual scientific conference (this conference has now taken place, but recordings of the event are available here). She ran through the finalised details of how different panel members would be involved in the conference through dedicated chatrooms, a PPI poster during the poster session, social media posts and a speech before the plenary session of the conference. Jennie also discussed the details of the public webinar that took place in early May and was organised as a result of the panel’s suggestions. You can watch the recording of the webinar here

At the end of the meeting, the panel discussed how they appreciated that recent presentations from UK-CIC theme leads were being pitched at a suitable, accessible level allowing for greater engagement and conversation. On this topic, Erika Aquino informed the panel that there was now a glossary with the definitions of some technical immunology terms on the UK-CIC website which you can see here.

Thank you to all the PPI panel members for their contributions and time at the meeting.

 


March 2021

The Patient and Public Involvement (PPI) panel met virtually in March for a meeting to reflect and review their activities at the six-month mark of the consortium. Phil was a very proficient co-chair, finding the right balance between discussion and careful time keeping.

To ensure the PPI panel are working as effectively as possible within the consortium, time was taken to discuss and review the panel’s feedback from the previous meetings. The panel agreed the extended two-hour meetings were providing good time for questions and discussion. The importance of researchers pitching their presentations at a suitable level for a public audience was discussed and it was agreed that explaining a few concepts well is more valuable than presenting an excess of data and information. With the vaccine rollout continuing to be a very topical issue in the media, it was described how although the development and rollout of vaccines was not within the remit of UK-CIC, the consortium is working to contribute to the important body of expertise on how our immune system responds to the vaccines.

The panel continued their work with Jennie Evans, Director of External Affairs at the BSI, on the planned public engagement activities around the UK-CIC Virtual Scientific Conference. After providing lots of valuable feedback, details of each event were finalised to ensure they will be relevant and accessible to everyone and be delivered in a variety of formats to reach as wide an audience as possible.

Paul Kaye, UK-CIC Theme 3 Lead spoke to the panel about the ongoing research in Theme 3 which is aiming to understand what is happening in our immune system that causes the tissue damage associated with COVID-19. Paul explained the process and importance of pathology research, describing how the outputs of Theme 3 will be translated to public health impact by identifying new candidate therapies for COVID-19. Paul showed the panel some exciting early data collated by Theme 3 researchers which is being used to investigate immune markers that identify one type of tissue damage over another.

A thought-provoking Q&A session followed where the panel asked questions on the accessibility of post-mortem tissue samples in a pandemic as well as the challenges of differentiating between tissue damage caused by co-morbidities and that caused by COVID-19. The importance of trying to obtain holistic data on an individual’s quality of life before death was also raised.

At the end of the meeting panel members used the online platform Padlet to give their feedback.

Thank you to all the PPI panel members for their contributions and time at the meeting.

 


February 2021

The Patient and Public Involvement (PPI) panel met in February for what proved to be a very productive two-hour virtual meeting. Adrienne was a skilled co-chair, ensuring there was plenty of time for interesting discussion.

Tracy Hussell, UK-CIC Theme 1 lead from the University of Manchester was welcomed to the panel to give an update on the ongoing research in Primary Immunity. Her engaging presentation explained the main research questions that Theme 1 is addressing. Tracy described how they have established a cohort of patients with COVID-19 in which the immune response to infection is being followed over a long period of time. This is enabling researchers to characterise the course of infection and develop models to predict which patients will develop more severe disease. She highlighted the diversity of this cohort, explaining how it will provide insights into the influence of factors like age and underlying health conditions on COVID-19 severity.

There were a number of interesting discussions during the Q&A session that followed Tracy’s presentation. The importance of including not only hospitalised patients, but also symptomatic patients from the community in research cohorts was discussed. The panel highlighted the relevance of recording qualitative data related to quality of life as well as quantitative data. Also, the benefits of PPI input when formulating research questions in the early stages of research projects emerged as another key topic. The panel agreed that the work in Theme 1 to understand if patient’s prior medications or health conditions affected their response to vaccinations was extremely valuable.

Paul Moss, UK-CIC Co-Chair, gave an overview of UK-CIC to date. As the consortium reaches its six-month milestone, Paul said that it has become very clear in recent weeks that a remarkable, collaborative community has been established that is producing high quality research and aligning with public health concerns. He discussed how each research theme has been able to respond to recent advances in vaccinations, therapeutics and ‘long COVID’ while staying focused on the initial aims of the consortium.

Following on from the panel’s excellent suggestions at the January meeting, the panel worked with Jennie Evans, Head of External Affairs at the BSI, to finalise a shortlist of ideas for public engagement events around the recently announced UK-CIC Virtual Scientific Conference and for PPI involvement within the conference. The panel will be continually involved with the development and delivery of these activities.

The meeting closed with the panel giving feedback through the online platform Padlet. These comments will be reflected upon during the next PPI panel meeting in March to continuously improve how PPI is embedded within UK-CIC.

Thank you to all the PPI panel members for their insightful contributions and time at the meeting.

 


January 2021

The PPI panel had their first virtual meeting of 2021 in January. In this two-hour meeting Deb was a great Co-Chair and made sure that the panel addressed all the items on their packed agenda, through her superb and fair timekeeping. Peter Openshaw, UK-CIC Co-Chair and Lead for ISARIC 4C workstream, attended the meeting. Peter gave a positive update on the progress of UK-CIC as a whole and highlighted the consortium’s importance in of the context of recent restrictions and the vaccine rollout.

Gabriela De Sousa, Research Communications Officer for UK-CIC, updated the panel on the additions that had been made to the 'For the Public' section of the website as actioned from the December meeting. A description of PPI and its importance, as well as the presence of the panel are now more visible. Links to further informative resources on a variety of COVID-19 topics have been added to the page.

The PPI panel then had a productive session with Jennie Evans, Head of External Affairs at the BSI, where they suggested ideas for how the panel can engage with researchers and the wider public in UK-CIC activities in the upcoming months. Some themes that emerged from this part of the meeting were the importance of demonstrating to the public that COVID-19 research is not something to fear and the benefit of hearing from multiple perspectives including patients, scientists and healthcare professionals.

The panel were also joined by Mala Maini and Thushan de Silva, UK-CIC Theme 4 leads. They both gave interesting presentations on the background of Theme 4 as well as some initial data that has been generated from their research. Mala’s research group are working to understand if exposure to other coronaviruses (such as those that cause the common cold) affect how you react to SARS-CoV-2. She explained how T cells generated by a different coronavirus infection might adapt to recognise SARS-CoV-2. Thushan then described how his research group have been working to understand if any variants of SARS-CoV-2 are able to escape from our T cell immune response. Afterwards the panel put insightful their questions to the theme leads. The differences in COVID-19 susceptibility between age groups, the longevity of our immune response and the importance of monitoring not only antibodies but also T cells was discussed.

The meeting closed with the panel giving feedback through the online platform Padlet. Each piece of feedback is valuable in ensuring that the PPI input to UK-CIC is as impactful as possible.

Thank you to all the PPI Panel members for their excellent contributions and time at the meeting.

 


December 2020

The Patient and Public Involvement (PPI) panel met virtually in December for a slightly longer meeting to reflect and review their activities from 2020. Sophia Co-Chaired in great style, following the agenda and allowing time for questions and discussion.

Paul Moss, UK-CIC Co-Chair, joined the meeting to reflect on the progress the consortium has made in its first four months. He described how in that time remarkable advances have been made in COVID-19 research both inside and outside UK-CIC. Paul felt that the UK-CIC has made a great scientific impact so far, providing many insights into the mechanisms of severe disease and many interesting studies currently going through the peer review process. The PPI panel wanted to ensure that all published work from the UK-CIC would include a summary of the research in plain language. 

In light of recent events, Paul also emphasised that although the development and rollout of vaccines was not within the remit of UK-CIC, the consortium is an important source of expertise for those directly involved with vaccines to understand how our body responds to COVID-19.

To ensure the PPI panel’s involvement in the project is as impactful as possible, time was taken to discuss and review the panel’s feedback from the previous meetings. Aspects that are working well as well as potential areas for improvement were considered. The panel agreed that everyone was feeling heard and that there was always good time for discussion. The panel then discussed ideas on how to better capture the impact of PPI in UK-CIC. The importance of highlighting both the presence of the PPI panel as well as the meaning of PPI to the general public on the website emerged as a key action point. It was also decided by the panel that it would be useful to collect more information on member’s individual interests and expertise within the panel.

Paul Lehner, UK-CIC Theme 5 Lead spoke to the panel about the ongoing research in Theme 5 which is aiming to understand how SARS-CoV-2 hides from the immune system. Paul L described the progress of COVID-19 infection viewed from the level of the virus. He explained why COVID-19 can spread so rapidly undetected in a population through its specific methods of evading our immune response.  This knowledge is helping to identify new lines of treatment. A Q&A session followed where it was discussed how looking at exceptional cases can provide useful insights, as we have seen previously in virus research. It was also discussed how research into COVID-19 immunology may have learnings for other areas like autoimmune diseases.

The meeting closed with the panel using the online platform Padlet to give their feedback on the meeting. These comments will be used for further reflections in the future. 

Thank you to all the PPI panel members for their contributions and time at the meeting. 
 


November 2020

The Patient and Public Involvement (PPI) panel met virtually for the second time in November, with a science-packed agenda. Lynn was a great Co-Chair and excellent timekeeper, ensuring everyone had an opportunity to speak.

Peter Openshaw, UK-CIC Co-Chair and Lead for ISARIC 4C workstream, was welcomed to the panel and explained how the consortium had allowed for a rapid research response to the pandemic. Peter presented latest findings on the effects of factors such as age and gender on COVID-19 mortality rates and the panel were able to ask questions. There were interesting points raised by the panel, including the need to include patients with rare diseases in the sample collection, which Peter confirmed was happening.   

The panel also heard from Paul Klenerman, UK-CIC Theme 2 Lead, who gave an overview of the science covered by Theme 2 and Theme 4 as there has been some overlap in the research being conducted. Paul explained how the immune response to SARS-CoV-2, the virus which causes COVID-19, can be both ‘good’ to help clear infected cells and ‘bad’ which can damage healthy tissue. Paul spoke about current progress that has been made in analysing the different immune responses in patients and how this helps with understanding what immune response is important for preventing reinfection. A discussion with the PPI panel followed including around considering long-term outcomes for patients after COVID-19 which look at quality of life. Bob and Tony sit on the Advisory Board and will take points of discussion and comments from the PPI panel to the next Advisory Board meeting for consideration by the scientists. 

Finally, Gabriela De Sousa, Research Communications Officer for UK-CIC, spoke with the panel about all the communications methods currently being delivered by the UK-CIC. Feedback was welcomed from the panel about the UK-CIC website design and information, and both internal and external newsletters. The website’s accessibility for a wide range of viewers was raised by the panel and is always considered when creating communications content. It was suggested that short summaries of the meetings could go on the website to showcase the impact of the PPI panel. Additionally, there was plenty of enthusiasm from the panel to contribute to ongoing UK-CIC public engagement and research communications – do keep an eye out for resources and materials in the future! 

The meeting closed with the panel using an online platform called Padlet, to share their thoughts about the meeting in order to evaluate and improve the PPI involvement in the project. 

Thank you to all the PPI panel members for their contributions and time at the meeting. 


October 2020

The PPI panel met for the first time in October, bringing all ten members together with Professor Paul Moss, the UK-CIC Principle Investigator, Professor Arne Akbar, the UK-CIC Advisory Board Chair and the British Society for Immunology team. It was the first opportunity for everyone to meet and a chance for introductions and getting to know each other. The PPI panel is co-chaired by Erika Aquino, Public Engagement Manager at the British Society for Immunology, and she led the first meeting. The PPI members will rotate as co-Chairs in future meetings.

The panel heard from Paul Moss on UK-CIC scientific overview and had the chance to ask questions about the research themes and priorities. It was an insightful session for everyone to better understand the framework and structure of the consortium. Arne Akbar introduced the panel to the role of the UK-CIC Advisory Board and explained how the board would be working in collaboration with the PPI panel. There will be ongoing feedback from the Advisory Board at each PPI meeting and specific topics will be raised for open discussion.

The meeting closed by considering how the PPI element of UK-CIC will be evaluated throughout the duration of the project. Evaluation of PPI is key to ensuring that the involvement is meaningful for all and impactful on the research. It’s important to measure success but also discover ways to improve future practice.

Thank you to all the PPI panel members for contributing their time and experiences at the first meeting.