How to use this toolkit

While this toolkit reflects real-world experiences developing and applying ePRO tools across a large health system, every healthcare system and site is different. Rather than provide a prescription for how to implement ePROs, this toolkit presents our learnings as a set of guidelines that can support other healthcare systems engaged in similar work.

The guidelines are organized around three core topic areas: ePRO Governance, ePRO Integration, and ePRO Reporting (see Figure 1A). The Tools and Resources section provides recommended resources and tools for further exploration. For users interested in understanding the big picture, consider reading through the toolkit in its entirety before beginning ePRO integration. Once the process has begun in earnest, users may wish to refer back to individual guidelines. While the guidelines are organized into three discrete sections, many aspects will need to be considered continuously or concurrently.

The use of technology to support ePROs will be referenced throughout this toolkit. It is important to acknowledge that technology changes rapidly and that each health setting will use technology differently. Therefore, the recommendations in this toolkit are meant to remain agnostic to any particular ePRO technology platform. When relevant, the toolkit may provide examples that refer to a specific technology approach; however, the goal of the toolkit is to provide readers with key learnings and tools that can guide their use of any ePRO technology.

A note on language

There are many topic-specific terms and acronyms throughout this toolkit. An Abbreviation list is available in the Tools and Resources section to define acronyms or terms that may be unfamiliar. We recognize that parallel terms may exist for a common concept, such as the use of “electronic medical record” and “electronic health record,” and readers may have different preferences for terminology based on their background and fields. The focus of this toolkit is supporting ePRO implementation and thus we use this term throughout when referencing PROs in the context of clinical care. Where warranted, we use the term PROMs when referencing measurement; however, we use this term sparingly to support ease of readability.