Is it Good Enough?

A guide for evaluating the quality and patient-centeredness of existing patient data. You can also download the document here.

1.  Transparency: Were methods described transparently enough to assess the quality of the patient engagement that took place?     
  • Is there transparency about limitations?
  • Is there a description of how patient input informed decisions?
2.  Patient Centricity: Was a patient-centered process used?   
  • Did the process begin with patients at the earliest planning stages?
  • Were patients leading or involved in determining what data was captured and analyzed, and how?
  • 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.)
  • Was data collected directly from patients?
  • Were patient participants informed about how data would be used, shared, and whether results or learnings would be shared back with them as participants?
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?
  • Did the study define clear research questions rooted in principles codified in the PC-CIS Blueprint?