People with Long Covid are keen be involved in, and to take part in, research and service development. We believe that meaningful patient involvement is crucial to the development of effective research, innovations and services.
We encourage researchers and service providers, as well as people with Long Covid to join our community on the Covid-19 Research Involvement Group on Facebook.
You are welcome to write posts to invite people with Long Covid to become involved in research or service development, or participate in research, or simply to highlight relevant research or services. Please note, the group is for the purposes of research or publicly funded service development, it is strictly not for the sole purpose of business promotion.
We maintain an up to date list of the research projects that our members are involved in - either as co-applicants, PPI partners or patient participants, along with a list of research papers and journal publications.
Members of Long Covid support were also recruited for public involvement in the NIHR reviews.
- NIHR Themed Review 2 - Living with Long Covid - March 2021
- NIHR Themed Review 1 - Living with Long Covid - Oct 2020
Support for Researchers
We are committed to facilitating a high-quality experience for all involved at every stage of the research lifecycle. If you would like to discuss the option of involving the Long Covid Support community in your plans or to gain feedback on a proposal, please contact us at
Please see the COVID-19 Research Project Tracker by UKCDR & GloPID-R for a live database of funded research projects on COVID-19 that will help funders and researchers identify gaps and opportunities and inform future research investments or coordination needs.
We recommend that investigators and service providers work within one of the existing frameworks for involvement, such as:
- UK Standards for Involvement
- NIHR Public Involvement in Research Guidance
- ABPI Working with patients and patient organisations Sourcebook
- NSUN 4PI National Involvement Standards
Further useful resources are:
- NIHR INVOLVE Briefing notes for researchers
- NIHR Brief guide to patient and public involvement in funding applications
- NIHR CED payments-for-public-contributors
- HRA PPI Best Practice
There are also free PPI training sessions for researchers online, for example:
- NIHR Cambridge Biomedical Research Centre Online PPI training for Researchers (bookable events)
- Imperial College London, Patient Experience Research Centre: Public Involvement Training (online course)
If you want to speak to us about public involvement we would be really happy to hear from you. Please email and we will be in touch.