Table 3.
Data processing plan for iPOF
| Forum data | Survey data | Interview data | |
| Collection | Posts from publicly available forums with no expectation of privacy, where the forum host consents, will be accessed directly. Prior to downloading the data, the study will be described and users invited to withdraw their data if they wish. Posts from forums requiring a login, with an expectation of privacy, will only be used from individuals who have freely consented (ie, they had the option to not consent and still use the service) to their data being used for research. Prior to downloading the data, the study will be described and users invited to have their data removed if they wish. Posts from forums in which consent for data to be used for research is required before joining the forum will be used, but only where it is possible to ensure that all users have been made aware of the option to opt out. Posts from forums linked to health or social care records, and no consent has been given for research at sign up, will only be used with additional individual informed consent. Finally, posts from forums that are closed, publicly available and where there are no links between posts and any personal identifiable data will be used without additional consent. |
Using REDCap with individual informed consent. | Using Microsoft Teams and an encrypted audio recorder, with individual informed consent |
| Deidentification | When forums are anonymous and publicly available, we will replace all usernames with a personal identification number (PIN) and automatically remove any names of places or people that could be identifiable. For all other forums, posts will be deidentified by the host organisation before being shared with us. |
Identifiable data, such as on consent forms, will be stored separately to the survey results. | Identifying information will be removed from transcripts. Identifiable data, such as on consent forms, will be stored separately. |
| Transfer | Data transfer from online communities to Lancaster University will be secure and encrypted (eg, secure FTP and HTTPS). | Data will be collected via a link directly into Lancaster University system. | Audio files will be uploaded to Lancaster’s servers and deleted from the recorder. Transcription will be done by a University approved and contracted transcriber. |
| Storage | Using Lancaster University’s approved IT systems. | Data will be stored on Lancaster University’s secure servers. | Recordings and transcripts will be stored on Lancaster University’s secure servers. |
| Analysis | Analysis (Natural Language Processing) will be conducted by methodological expert members of the research team (see table 1). | Analyses will include detailed description of the sample and the use of generalised mixed models and structural equation models using Mplus (V.8.6). | Analysis will be retroductive and will contribute to hypothesised CMO configurations. Analysis will be managed in NVIVO. |
| Deletion | Participants will have the right to withdraw and request that their data be deleted, up to the analysis starting. | Participants have 1 week to request their data to be removed. | Participants will have the right to withdraw and request that their data be deleted, up to the analysis starting. |
| Publication | To preserve anonymity, paraphrased forum quotes will be published. | Minimum cell sizes will be adopted for published results. | If consent is given, direct quotes will be published. Any potentially identifying information will be removed. |
| Archiving and access | All papers will be published open access. Given the nature of the data we will not share the forum data sets openly. | Deidentified survey data will be openly shared on Pure. | Interview data will be restricted access and available by request to legitimate research parties if the purpose is consistent with the consent given for this research. |
CMO, Context-Mechanism-Outcomes; iPOF, Improving Peer Online Forums; REDCap, Research Electronic Data Capture.