Patient Advisory Group
We have a patient advisory group made up of individuals from ethnic minority backgrounds who live with Long Covid or who care for someone living with Long Covid.
They are involved in each stage of the research process to ensure that our research is conducted and interpreted in line with the needs of patients and the public, and to maximise patient benefit from our research.
Watch our short video for more information about involvement from our patient advisory group.
We will work with key groups and figures important in the care and management of Long Covid to devise different ways of implementing our research findings into improving better management of Long Covid as well as to share our findings with patients and members of the public.
We are interested to work with:
- Friends, family members of people living with Long Covid;
- Informal carers of people living with Long Covid;
- Religious and faith networks and organisations;
- Voluntary and community groups;
- Social prescribing sector;
- Long Covid support groups;
- Health- and social-care professionals.
Please contact us if you would like to get involved in the stakeholder workshops (running between December 2022 to March 2023).
Through sharing of patient stories, we will better understand the needs of under-served groups, such as those from ethnic minority backgrounds, around Long Covid.
The artwork co-created with people living with Long Covid will be used to raise awareness of the experiences of Long Covid in people from ethnic minority backgrounds amongst the public and health- and social-care practitioners.
We want to inform better healthcare services for Long Covid that match the needs of people from ethnic minority backgrounds – that help reduce barriers to access and facilitate earlier engagement with appropriate Long Covid services.
- We will work with the healthcare sector (e.g. General Practitioners, Long Covid specialist services, local clinical commissioners and public health services) to inform better healthcare experiences for patients – including access and delivery of care. This might look like training for healthcare professionals, service adaptations and interventions for accessing and/or engaging with current Long Covid care services.
We want to inform better joining up of healthcare services with wider support systems and networks, these might be friends, family members, informal carers, voluntary and the community sector, religious and faith organisations and networks.
- We will work with these groups to understand how to inform NICE guidelines on better linking up of services and self-management for Long Covid.