Development of the National Health Council Patient Experience Mapping Toolbox


By Elisabeth Oehrlein, PhD, MS, Senior Director, Research and Programs

The National Health Council (NHC) has kicked off an exciting new project to further our work in patient engagement. It’s called the Patient Experience Mapping Toolbox. The science and methods of patient engagement are evolving, and to engage well, a critical starting point is understanding the patient journey from the patient perspective.

Current tools for capturing the patient journey have important limitations. At this time, most tools are not designed support co-development with patients. For example, even though we know that aspects of the patient journey aren’t always captured in the literature, some tools are intended to be completed using only published data. The language used is not always understandable to patients. Some assume a diagnosis has already occurred. But, the journey to diagnosis can be lengthy and challenging.

Once completed, our Toolbox will include a patient-friendly journey map, data collection tools (e.g., interview guide), a user guide, and examples of completed journey maps. We expect our Toolbox can help:

  • Patients/patient groups provide a cohesive picture of the patient experience with disease and treatment;
  • Industry/academic researchers engage patients when studying a condition;
  • Establishing programs and priorities by policymakers;
  • Clinicians and patients as part of communication tools to support shared decision-making;
  • Funding agencies by informing their research prioritization and merit determination; and
  • Value assessors comparing treatment options for a population.

If you have any questions about this project or would like to be involved, please contact Silke Schoch at [email protected].