Table 3

The key issues encountered and recommendations for producing and disseminating findings

ThemeIssueRecommendation
Analysing dataEver-growing questionnaire – coding and merging dataChanges to surveys may be inevitable during an unfolding pandemic. Planning for how to code changes and having all data time-stamped will enable merging and cleaning of data.
Ever-growing questionnaire – managing data analysisWhere possible, do have a draft analysis plan. It will add focus to the study, highlight specific data needed to answer specific questions, will save time later during data analysis, will restrict mission creep, and will result in a more robust study.
Interpreting dataControl groupConsider in advance whether a control group is needed and how such data can be obtained. Linking in with other researchers working in related studies and agreeing on a common minimum questionnaire set may be beneficial to all parties.
Reporting findings/data sharingOngoing reportingHave a clear dissemination policy and a plan for how, when and how frequently to release data or report findings. Having PPI input at this stage is vital to ensure that the intended patient group can understand the data. Be clear that the study is ongoing, so the findings may change when more data accrue, and as the pandemic and resultant government policies change.
Having clear messagesBeing clear of the outputs, and not losing sight of the original questions and what is important for the clinicians and patients, may help structure the messages. Keep messages simple. Having PPI input at this stage is important.
Protecting intellectual propertyRegister the study on an online study registry, like ClinicalTrials.gov. Have a clear copyright statement and provide contact details of key authors to respond to data sharing requests.
Data sharingConsider having a data-sharing policy early on. The MRC has produced a useful guide for researchers http://www.methodologyhubs.mrc.ac.uk/files/7114/3682/3831/Datasharingguidance2015.pdf
AuthorshipHaving a plan for authorship at the start of the project is helpful. Use the International Committee of Medical Journal Editors guidelines as a starting point http://www.icmje.org/recommendations/browse/roles-and-responsibilities/defining-the-role-of-authors-and-contributors.html
  • MRC, Medical Research Council; PPI, patient and public involvement.