Tools for Co-Creating Patient-Centered Comparative Effectiveness Research
Are you interested in conducting diagnostic comparative effectiveness research (CER), like the type that the Patient-Centered Outcomes Research Institute (PCORI) funds, but you don’t know where to start? The resources and tools on this page can help you to translate your issue or topic into a CER question, and identify opportunities and methods to co-create your research concept with patient research partners. Access background materials, tools, and workshops presentations and discussions.
The Diagnostic Researcher Workshop Pre-Reading Material is great to use as both an introduction and quick reference for anyone interested in conducting patient-engaged diagnostic CER. Because CER is a very specific type of research that is new to many, it can be instructive to review examples such as these funded by PCORI. It may also be helpful to understand why CER is so valuable for shared decision-making, as outlined in this PCORI video, and in this PCORI Senior Program Officer’s presentation. Once you’ve gotten more familiar with the concepts and foundation for CER, you can use the CER Template which was used in a hands-on exercise at the workshop to help researchers and patients/families better understand how to formulate a CER question. Read More
Learning about CER is only part of the task however; to better understand how to partner with patient and family research partners, you should consult the PCORI Patient and Family Engagement Rubric and related journal article, The rubric provides tangible guidance for making engagement in research actionable. When working in diagnostic research, a key first step in patient and family engagement is to spend time discussing and understanding the diagnostic process, which is laid out in helpful detail in the National Academies of Medicine diagnostic process graphic. Learning from other’s experience in this space can also be incredibly informative. This slide deck was presented by two experienced parent advocates with personal experiences of diagnostic error in their children. They explain how they became involved in diagnostic research and policy as parent partners, and offer tips and ideas for meaningful patient engagement in CER. Finally, to more specifically design your plan for engaging patients and families, you can employ the Patient Engagement Template to put your vision into writing.
This information is the result of a PCORI-funded “Diagnostic Researcher Workshop” held November 9, 2019, that brought together patients/families, researchers and others to learn about conducting patient-engaged CER. What follows is a guide for how each item can be used. We would like to thank our researcher and patient partners who made this project a success: Lori Blough, Col. Steven Coffee, Desiree Collins Bradley, Mark Graber, Rob El Kareh, Prashant Mahajan, Kathy McDonald, Daniel Mullins, Gordon Schiff, and Sue Sheridan.
Workshop Presentations and Discussions
This Diagnostic Researcher Workshop was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Engagement Award Initiative (EAIN-00009). The content does not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee.