Patient and public involvement and engagement in real world data and evidence research across the medicines development cycle: a rapid review of peer-reviewed literature and NICE technology appraisals
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Summary
This summary is machine-generated.Patient and public involvement and engagement (PPIE) is rarely reported in real-world data and evidence (RWDE) research. Consistent reporting and more inclusive approaches are needed to ensure PPIE meaningfully informs RWDE studies.
Area Of Science
- Pharmacovigilance and Drug Development
- Health Services Research
- Patient Engagement in Research
Background
- Real-world data and evidence (RWDE) are increasingly used in the medicines development lifecycle.
- Patient and public involvement and engagement (PPIE) is crucial for ensuring research relevance and patient-centeredness.
- The reporting and quality of PPIE in RWDE research remain underexplored.
Purpose Of The Study
- To understand the reporting, role, and quality of PPIE in RWDE research.
- To assess PPIE across the medicines development cycle.
- To identify areas for improvement in PPIE within RWDE studies.
Main Methods
- Rapid review of Medline and Embase databases for peer-reviewed literature and conference abstracts.
- Assessment of PPIE in 100 NICE technology appraisals (TAs).
- Utilized the Patient Focused Medicines Development (PFMD) Patient Engagement Quality Guidance (PEQG) for quality assessment.
Main Results
- Included three RWDE studies and two NICE highly specialized technologies (HSTs) reporting PPIE.
- Reporting of PPIE was limited; no studies reported a PPIE framework.
- Four out of seven PFMD quality criteria for PPIE were poorly reported, indicating a need for improvement.
Conclusions
- PPIE is rarely reported in RWDE research, necessitating consistent reporting standards.
- Insufficient information often prevents judging the meaningfulness of PPIE.
- Preliminary evidence suggests PPIE can influence protocol development, recruitment, and retention in RWD studies, enhancing the interpretation of RWE for patients and carers.
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