How to Assemble

In pulling together the Patient-Centered Core impact Sets (PC-CIS), the previously discussed foundational concepts of transparency and inclusivity should be continued in the final compilation.

The public report of impacts should include (but need not be limited to):

• Clear and concise descriptions of methods used, including:
  • Details about how patients led or were equal partners throughout the process
  • Accessible tools, guidances, or other materials used that others can learn from or borrow
• An accounting of everyone who was involved (organizations and individuals) and their respective roles
• Funding sources, if relevant
• Considerations, projected uses, and/or target audiences

The impact information should be presented in a logical format (for example, as outlined in this reporting tool), explaining how impacts were filtered or narrowed at each stage.  The report should include at least:

• All patient-reported impacts identified (the full range collected)
• The impacts prioritized by patients
• All impacts reported by other stakeholders
• Final prioritized core impact set

The same need for transparency described earlier in the Blueprint is relevant in the compilation of the final report. 

• See the Core Outcome Set- STAndards for Reporting (COS-STAR) Guidelines for resources on transparency in reporting
• The Center for Medical Technology Policy (CMTP) coreHEM final report also provides valuable guidance for explicitly sharing methods and results for each stage in the process.

Additional Considerations for Assembling and Reporting

Including Other Information

If possible and where relevant, the report may include things that are related to the core, but are not core impacts, such as tools or measures identified for relevant impact concepts – but only if they have been assessed by the PC-CIS developers as specifically addressing impacts in the PC-CIS and are evaluated for patient centricity, sound methods, and a relevant context(s) of use. Assessing these tools can be challenging and resource intensive. Before recommending a tool, the PC-CIS developer needs to be comfortable that the tool is measuring what it claims to measure and is a useful extension of the PC-CIS in application. These add-ons are not core impacts but can help with efficiency in application of the core set. They are not required for a PC-CIS.

Dissemination and Open-Source Sharing of PC-CIS

In the spirit of accessibility and mutual opportunities to learn, it is a best practice to make your PC-CIS available in a variety of locations that are accessible and usable by patients and other stakeholders (e.g., open access). It would also be valuable to disseminate PC-CIS through non-traditional channels, such as patient advocacy organization websites and other patient-facing media and online channels.

Arthritis Use Case

The full list of patient-prioritized outcomes was compiled and shared back with patients and families, and the final report was released publicly.