A guide for evaluating the quality and patient-centeredness of existing patient data. You can also download the document here.
| Consideration | Yes | No | Unclear |
| 1. Transparency: Were methods described transparently enough to assess the quality of the patient engagement that took place? | | | |
- Is there transparency about limitations?
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- Is there a description of how patient input informed decisions?
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| 2. Patient Centricity: Was a patient-centered process used? | | | |
- Did the process begin with patients at the earliest planning stages?
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- Were patients leading or involved in determining what data was captured and analyzed, and how?
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- Did patients have an equal/balanced role in all phases of the work? (e.g., governance role, decision-making, data interpretation and application, designing materials for patients, etc.)
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- Was data collected directly from patients?
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- Were patient participants informed about how data would be used, shared, and whether results or learnings would be shared back with them as participants?
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| 3. Representativeness: Is the population represented in the data the same as the population that is the Patient-Centered Core Impact Set (PC-CIS)? | | | |
| 4. Timeliness: Is the data recent enough to reflect what patients are experiencing currently? | | | |
| 5. Methods: Were the methods used to collect the patient-impact data based on sound principles (e.g., good practices for qualitative or mixed methods research as outlined in the Blueprint)? | | | |
- Were limitations of the methods or limitations of the data clearly described?
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- Did the study define clear research questions rooted in principles codified in the PC-CIS Blueprint?
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