Background: Long COVID (LC) or Post-COVID syndrome affects up to one million people in
the UK and is a syndrome of persistent and fluctuating symptoms, with underlying organ
dysfunction and multimorbidity. England has 83 dedicated multidisciplinary LC clinics
(with no funding yet in Scotland, Wales or Northern Ireland), but these are unable to
meet the growing demand and many patients are currently not getting timely care. There is
an urgent need to develop a UK-wide efficient integrated LC service.

Aim: We will optimise LC management across three settings of care - LC specialist clinics
(Work stream (WS)1); Homes/self-management (WS2) and Primary care (WS3).

Methods: WS1: The management options for multisystem medical problems will be
standardised to derive best practice guidance using a Quality Improvement collaborative
involving embedded clinician researchers from 10 UK-wide LC clinics. Experience-based
co-design with patients and healthcare professionals will inform training and resources
for both. Ethnic and socioeconomic inequalities of care and vocational challenges of
patients will be addressed using qualitative and mixed methods approaches.

WS2: A digital platform incorporating wearable technology will capture symptom
fluctuations and individual condition triggers to enable biofeedback for self-management.
Core outcomes measures including the first published LC patient-reported outcome measure
(Yorkshire Rehabilitation Scale C19 YRS, developed by the co-CI) will be made available
on the digital platform for monitoring and directing interventions remotely.

WS3: Existing primary care and LC clinic integrated data will assist in developing and
evaluating new integrated cost-effective service models that will enable the best
practice guidance developed in WS1 to be delivered at point of contact in primary care.
We have links with previously funded NIHR LC projects to enable co-learning and
maximising impact.

PPI/E: From understanding how COVID-19 has disproportionately affected different
communities, we have created a seven-member core PPI Advisory Group (PAG) that is
inclusive of different cultural, ethnic and socio-economic groups. They have attended our
proposal research planning meetings and met separately to examine and develop the
research aim/objectives/ questions, ensuring these are aligned with the key research
priorities of patients with LC as well as representing different patient needs.

PAG members have lived experience of LC, and bring information and experience from
participating in patient support groups including Long Covid Support (n=38K), doctors
with LC and a LC Physio. PAG members have been involved in research design for previous
NIHR bids, have acted as patient representatives on the NHS England LC Taskforce, and
have led national audits on access to LC clinics. The PPI Lead is a founding member of
the LC Employment Taskforce of Society of Occupational Medicine and a representative on
the Access to WHO Covid Therapies Accelerator (ACT-A) committee. Some members meet weekly
as members of Employment Steering Group of the LC Support Group including liaising with
Unions.

In this study, the PAG will meet quarterly to review progress, ensure the research is
answering the most relevant urgent issues in LC care and that the findings are
translational and rapidly informing LC care. To ensure the different demographics of each
of the ten LC Clinics are represented, two PPI members from each Clinic will be invited
to join a Patient Advisory Network (PAN). Information will flow between the PAG and the
PAN via the PPI Lead and Co-lead, ensuring that the voices of the PAN are represented
within the PAG, and that they receive updates about research activity in the same way as
PAG members. With support from the PPI Lead and Co-lead, PAN members will have an active
role in gathering and sharing local intelligence about various aspects of the LC
experience and LC Clinic access from LC patients representative of different groups e.g.
via the voluntary sector and GP surgeries in different locations, including remote areas
where there may be more elderly people with less access to LC clinics. The PPI
Facilitator will provide the PAN members with PPI training, and provide them with the
appropriate support needed to carry these activities out and contribute to the PAG.