Table 1 Patient and public involvement within epidemiological studies of long COVID in the UK
From: Patient and public involvement within epidemiological studies of long COVID in the UK
Study | Number of patient advisors | Profile of participants | Regularity and location of meetings | Main outcomes |
|---|---|---|---|---|
CLoCk | 13 | All aged 11–17 years; 67% white; all deprivation deciles included | Quarterly online meetings | Delphi definition of long COVID Dissemination of findings Changes to survey questions Input into qualitative design Input into data presentation Long COVID artwork Changes to newsletters Awards for involvement |
CONVALESCENCE | 12 | Diverse in social and ethnic backgrounds | 5 training workshops and 7 tailored workshops so far; 2 PAG members attend quarterly executive meeting | Changes to questionnaires and other instrument design Refinement of ethics Communications Materials development for internal and external use Changes to researchers’ interpretations of qualitative work |
TLC | 15 | Diverse in age, ethnicity and employment status | Ongoing online opportunities throughout lifetime of project | Identifying need for new Symptom Burden Questionnaire and need to survey participants about self-management strategies Changes to recruitment strategy Improved participant-facing study materials Coproduction of feasibility study Coselection of pacing resources Codesign of study processes and app testing Supported community engagement and recruitment Identified key messages for research outputs Dissemination of research outputs |
REACT-Long COVID | 13 (plus 161 members of REACT: COVID-19 Community Network) | 9 women and 4 men; diverse group that includes people with lived experience of long COVID and participants in the original REACT studies | Quarterly online meetings. Each advisor is allocated to one of four work streams to work closely with researchers; community network disseminates updates and involvement opportunities | Changes to questionnaire design Improved participant-facing study materials Interpretation of pilot qualitative findings Involvement in publications and dissemination Work with researchers to establish an online research involvement hub on VOICE-Global |
PHOSP-COVID | 50 advisors and 11 charities | Diverse in terms of age, ethnicity, socioeconomic status, including patients and carers with lived experience of acute COVID-19 and long COVID, and hospitalized and non-hospitalized patients | PPI embedded throughout all stages of project, with regular meetings depending on project needs, conducted via email, phone or teleconference | Input into study design and conduct Joint Research Question Priority Setting6 Improved participant-facing study materials Review and testing of new study processes Public webinars and newsletters for dissemination |
STIMULATE-ICP | 11 | PPI advisory group representing social, ethnic and geographic diversity | PPI attendance at monthly consortium meetings and separate monthly PPI online team meetings | Involvement in research publications Educational videos PPI blog on study website Media and social media engagement Policy and other articles in nonscientific publications PPI-led e-book about experience of long COVID |
OpenPROMPT | 3 | PPI advisory group comprising 3 individuals, and OpenSAFELY Digital Critical Friends (DCF) Group, feeding into the group on specific issues related to the data collection platform | Online webinar at study start; PPI attendance at online OpenPROMPT meetings every 6 months, with additional email feedback on research plans; OpenSAFELY DCF online meeting every 3 months; ad hoc PPI online focus groups on specific topics | Adaptations to study protocols Improved public-facing study materials Codesign of public explainer materials for OpenSAFELY |
