Ensuring Transparency

Creating and Ensuring Transparency

It is critical that methods used to develop or update Patient Centered-Core Impact Sets (PC-CIS) be transparent, particularly when it comes to patient centricity. It must be clear who was engaged in the process, how, and when. All stakeholders involved and their contributions should be acknowledged. Methods for collecting and analyzing data, prioritization and consensus building processes, and other actions should be clear and provide enough detail that a reader can assess the soundness and rationale. It is important that documentation of methods be planned for in advance to ensure completeness, accuracy, consolidation, and transparency. Policies should be in place to ensure document storage and retention so that a PC-CIS can be assessed by all potential users and those who will add information in the future.

Potential resources include:

  • Standards for developing a Core Outcome Set (COS) which can provide a sense of the types of activities and practices important to include
  • Standards for maintaining transparency in the reporting on the development of a COS can be useful for ensuring transparency in the development of a PC-CIS
  • Innovation and Value Initiative’s (IVI’s) Open Source principles on how to transparently and accessibly communicate
  • The International Society for Pharmacoeconomics and Outcomes Research’s  (ISPOR’s) Open Source Models Special Interest Group publications and convening on barriers and facilitators to transparently sharing methods and processes

Arthritis Use Cases

Arthritis Foundation, Maintaining Transparency