Event Summary: Let’s Talk About Long COVID Research
- Health & Social Care Research, Infectious diseases, Multiple Conditions
- Philippa Pristera
On Thursday 29th April 2021, the Patient Experience Research Centre held the Let’s Talk About Long COVID Research public event to kick off the REACT Long COVID research study being led by Imperial College London. Building on from Imperial's REACT (REal-time Assessment of Community Transmission) study, REACT-Long COVID (REACT-LC) aims to better understand why some people continue to experience long-lasting or recurrent symptoms after COVID-19 (i.e. Long COVID), and how these varied symptoms are experienced. By combining public involvement and engagement with formal research surveys, qualitative interviews, and clinical and biological assessments of past REACT participants, this work hopes to identify possible genetic, biological, social or environmental reasons risk factors for Long COVID, support diagnosis and patient care, as well as shed a light on possible treatment options.
How did it go?
The virtual session opened with an informal presentation about the aims and plans for the study, followed by a Q&A session where questions from VOICE members and other members of the public with personal experience of or interest in Long COVID were posed to the team by our public panel.
In case you missed it, we recorded the session so you can watch it here:
If you want to jump ahead to something specific, here are the time stamps for specific points in the recording.
- Introduction to REACT > 00:02:59
- [Preliminary findings from the REACT dataset > temporarily removed, coming soon once published]
- The aims and research plan of REACT-Long COVID > 00:08:28
- Our approach to qualitative research > 00:13:06
- Our approach to public involvement > 00:16:27
- Comment 1: The challenge for research of recruiting people who do not have proof of past infection > See 00:24:45
- Question 1: Are you including children in the study? > See 00:26:15
- Question 2: Will the impact of vaccines on Long COVID be investigated during this study? > See 00:27:53
- Comment 2: Not only is there a gap in current research for 17 to 18-year-olds but there’s also a gap for under 11s > See 00:29:25
- Question 3: Will you be including more symptoms and given the diversity of experiences, will you have enough people in the study to understand the very varied profiles > See 00:29:58
- Question 4: Are you exploring the potential effects of oestrogen on COVID? > See 00:36:14
- Question 5: Could you comment on whether you will be investigating autoimmunity and/or inflammation among those affected by Long COVID in this study? > See 00:40:08
- Question 6: Will you be collaborating with other groups/ research studies and will you include people outside of England/in other nations? > See 00:43:08
- Question 7: Is there something people did in those early weeks that helped aid their recovery and how quickly could recommendations and new findings be relayed to front-line care? > See 00:46:07
- Question 8: How do you plan to share early results? > See 00:48:06 and 00:53:14
What did our public audience say?
After the session, the final list of questions and comments submitted before, during or after the event were collected together, reviewed and summarised into five key areas:
- Understanding who is being included in this research and how people can support
- This was primarily focused on ensuring research includes a diverse range of experiences and circumstances, particularly considering those who don’t have proof of past infection. But also touched on the geographical remit of the study, age range, possible bias and ethnic diversity
- Understanding what tests/symptoms we will/will not be carrying out/monitoring and what biological mechanisms we are/are not able to explore
- This included a) Involvement of/effects on sex hormones/oestrogen in those with Long COVID; b) Impact of vaccination on Long COVID; c) Exploring links with autoimmune disorders, ME/CSF, chronic inflammation; and d) Impact of returning to work/employment/exercise/lifestyle on recovery
- There was also a lot of interest in which symptoms will be monitored and how we’ll explore the vast symptom profiles experienced. Ongoing involvement and conversations with patient groups, healthcare practitioners and researchers will be important to help define symptoms in a clinical sense, but also help our understanding in what they mean. Our challenge on VOICE ‘Defining Long COVID symptoms’ is one small step towards this goal
- Understanding what may aid recovery, improve symptoms and help people feel “normal again”
- People were keen to know how their experiences compared to other people’s, when they would “feel normal again” and what they could do to aid recovery.
- Attendees shared an interest in monitoring the impact of employment/returning to work, as well as exercise, in the development of Long COVID
- Understanding the timelines and how findings and potential therapies will be communicated
- Attendees were interested to know more about our communication strategy and how key findings and recommendations could be rapidly disseminated to front-line care. They wanted to see us continue to share early findings and hold open discussions with patients and healthcare practitioners
- Understanding who we are collaborating with and how REACT-LC fits with other COVID-19 research
- People were keen to know how we will be collaborating or collating and sharing our data with other researchers to optimize the speed and impact of Long COVID research
What's next in our plan?
This session has been a critical step in starting up Imperial’s REACT Long COVID research and of great help to the research team. It:
- highlighted people’s key research/project priorities (e.g., identifying possible treatments or recommendations that improve recovery, coordinating work and communicating findings widely and quickly)
- reiterated the importance of including a diverse range of people, perspectives and circumstances in the REACT-Long COVID study. We are now looking further into how we might be able to identify people affected by Long COVID even if they do not have a positive PCR or antibody test (e.g. using reported symptoms, whether they suspected COVID, free text etc) or identify as having Long COVID
- identified new areas of analysis and prompted the team to discuss the specific biological aspects that could be monitored, including whether it would be feasible to monitor sex hormones as part of the clinical assessment and revisiting what questions are currently asked around menstruation
- will help the development of our study FAQ page (https://react-lc.net; coming soon) as well as inform ongoing research, communication and engagement activity.
We hope to run further science cafés, webinars and involvement activity across the course of the 3-year project to help the team progress the research together with those who’ve been affected by Long COVID. We are connecting with other Long COVID research teams and are also in the process of developing a Long COVID Research Hub where we hope to collate future opportunities, updates and resources relating to Long COVID research in one place.
To stay up-to-date on our progress or hear about future opportunities, please join the REACT: COVID-19 Community Network. If you have any questions or wish to share your experiences, please email us on [email protected]
We hope to share more in due course.
Best wishes from
Patient Experience Research Centre,
On behalf of the REACT Long COVID Research team, Imperial College London
The REACT-LC study is being led by researchers from the School of Public Health at Imperial College London, including Prof. Paul Elliott, Prof. Graham Cooke, and Prof. Helen Ward. It will be carried out in partnership with a wide range of public advisors from across England and external collaborators from Queen Mary University of London, the Francis Crick Institute, Leiden University, Southampton University, Birmingham University and Newcastle University. The public involvement activity within this research is being led by Imperial's Patient Experience Research Centre, with support from VOICE Global.