Primary Collection: Key Considerations
If substantial gaps in existing data are identified, primary data collection may be required to fill those gaps. Before embarking upon qualitative or quantitative research, it may be helpful to review some best practices, in partnership with the research members of your team. Things to consider include seeking Institutional Review Board (IRB) approval, understanding the ethical considerations and regulations that govern research, and how to design forms for and collect informed consent.
Keep in mind that the task is to collect impact data and not to identify specific tools or measures at this point in Patient-Centered Core Impact Set (PC-CIS) development. The identification, adaptation, or development of measures is a “next phase,” after the creation of the PC-CIS and is not covered under the resources and guidance provided within this Blueprint.
Before embarking upon primary data collection, there are several steps and preparations to consider. Pages 6-9 of the NHC’s Patient Experience Mapping Toolkit Project Coordinator Guide, which outlines general research considerations and best practices for primary data collection, may be useful as you are contemplating how to prepare for data collection.
Primary Collection: Qualitative and Quantitative Methods
A host of methods can be employed for primary collection of impacts from patients. The most important aspect of data collection is that it is done in partnership with patients, not in a manner that integrates patients only as research “subjects.”
Numerous qualitative approaches exist with resources to support work in this area.
Qualitative methodology options include:
Various mixed methods approaches are also available for use in primary data collection. Be mindful that purely quantitative methods may fall short of PC-CIS standards unless the survey (or other tool) was co-created with patients, and patients are involved in data analysis, interpretation, and application. A survey developed in isolation by researchers — even if posed to patients and even if patients are the sole and independent responders — should not automatically be considered patient-centered data. Patients are often asked to provide responses to questions they do not care about or understand. Just because patients answered the questions does not make the resulting data patient centered.
Mixed-methods approaches include: