Is it Good Enough?

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

ConsiderationYesNoUnclear
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?
   
Disclaimer:
The Patient-Centered Core Impact Sets was created by the National Health Council (NHC). All rights reserved. This document may not be reproduced or distributed in whole or in part without express written permission from NHC. Nor may third parties translate, edit, modify, or otherwise create derivative works from the document. This document is provided for educational purposes only and should not be considered medical or legal advice. The document is provided “AS IS” without any warranties, express or implied, and NHC expressly does not warrant the accuracy, fitness, merchantability, safety, or usefulness for
any purpose of this document.