TABLE A3.
Reference | 1. Aim: report the aim of PPI in the study | 2. Methods: provide a clear description of the methods used for PPI in the study | 3. Study results: outcomes—report the results of PPI in the study including both positive and negative outcomes | 4. Discussion and conclusions—outcomes on the extent to which PPI influenced the study overall. Describe positive and negative effects | 5. Reflections/critical perspectives comment critically on the study, reflecting on things that went well and those that did not, so others can learn from this experience |
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Anderson et al 36 | Preliminary drafts of the questionnaire were refined with input from a sample of 8 patients. | ||||
Lee et al 37 | Included in key informant interviews on experiences and perspectives of using PGHD in the postoperative SSI setting, which was included in the final data synthesis | Highlights importance of having a broad stakeholder group involved in design process, although does not provide examples specific to consumer involvement | |||
McCaughan et al 38 | Three patient advisors to act as key informants throughout study | Design and piloting of interview guide and feedback on study findings and early drafts | Involvement in research process was a key strength, which helped to shape interview methodology and interpretation | Contributions were crucial to reflection on the meaning of the interview data and its interpretation | |
McNair et al 39 | To define a COS for use in trials and other studies, agreed upon by patients | Patient representative involved grouping patient‐related outcomes into different domains. Patients and carers involved in consensus meetings to vote on final list of the COS | As a result of the consensus meeting, patients identified domains, which had overlapping content or themes and voted for them to be combined to prevent confusion | ||
Reeves et al 40 | To work with a PPI group to inform the conduct and design of a future RCT | Patient representative on steering committee. Two PPI meetings to discuss RCT design elements and how to best engage with future participants | PPI involvement influenced the design of a patient information leaflet to be more user‐friendly, the design and delivery of a wound‐experience questionnaire, strategies for improving adherence to trial allocation in future RCT and ways to incorporate PGHD including digital photos of wounds | PPI meetings changed RCT protocol and design elements including considerations for adherence, reducing participant dropout, and completion time for questionnaires | To ensure clarity about the role of PPI work, to make the best use of PPI panel members' and researchers' time |
Sanger et al 41 | Including patient as part of multidisciplinary team was a core strength of the study, although did not report what specifically they contributed | ||||
Sanger et al 42 | To represent the patients' perspective contributing to the development of a paint‐centred data collection tool (mPOWER) |
Patient advisor and patient advocates involved in study design, data analysis, technology development, and manuscript preparation. “Think‐aloud” approach utilised |
Agreement and conflict between patient advisors/advocates and providers impeded design and adoption of mobile technology interface | Highlights importance of an iterative design process, to ensure ongoing input and preventing overshadowing of ideas. Acknowledgement of potential self‐selection bias with recruitment of patient advisors from a pre‐existing panel | |
Wiseman et al 43 | A community‐based research advisory focus group was used to provide feedback and a patient's perspective | To develop and inform a preliminary survey draft to assess smartphone capability in outpatient wound assessment |
Abbreviations: COS, core outcome set; GRIPP2, Guidance for Reporting Involvement of Patients and the Public; PGHD, patient‐generated health data; PPI, patient and public involvement; RCT, randomised control trial; SSI, surgical site infection.