PROMs and PREMs: a call for improving interpretability and usability of results

Currently, increasing attention is given to the interpretability and usability of information derived from PROMs and PREMs. Among the strategies undertaken are efforts to link such information to clinical data and discussing results between patients and doctors. A crucial issue for the future concerns the multiple goals that may be addressed with PROMs and PREMs and how to deal with existing tensions between these goals. A study by Nivel and the National Health Care Institute in the Netherlands yielded these common themes and challenges.

Fifteen years ago, health care providers in the Netherlands considered PREMs and PROMs as instruments for accountability and control that did not produce much benefit for providers themselves or their patients. Increasingly, the use of PROMs and PREMs is initiated by health care providers themselves with the intent to use the data for clinical care and quality improvement. Initially PREMs were used most in the Netherlands, but lately PROMs enjoy an increasing popularity. PREMs remain, but are generally shorter and more generic now compared to five or ten years ago.

Interpretability and usability
Regarding information based on PROMs and PREMs, there appears to be a shift in attention. Nivel researcher Dolf de Boer: ‘About ten years ago, the implicit assumption appeared to be that the best way to facilitate the use of data is to ensure the quality of the data using scientific methods. Nowadays, it is understood that organizing the interpretation and use of data is a separate and much bigger challenge than it was perceived to be in the past. Accordingly, efforts to implement PROMs and PREMs increasingly focus on the actual use of the results. Examples include refinement of the instruments and data collection methods with the intend to improve usability of results, using data in consultations, and enriching data from PROMs and PREMs with clinical data or narratives. The efforts undertaken are huge and justify the expectation that substantial steps will be made in the further implementation and utilization of PROMs and PREMs.’

Collecting data once for many different purposes
In an ideal world, data are collected once and used for many different purposes including patient care, quality improvement, patient choice, pay for performance, etc. However, experience teaches us that this is very difficult to accomplish as it involves many compromises. Therefore, those involved are often left with the feeling that the result isn’t useful for anybody. At the same time it is hardly desirable that different stakeholders all develop their own instruments and data collection dedicated to their goals.

Different goals: combinations and priorities
An important lesson for the future might be to prioritize one goal, while keeping other goals in mind.

Marloes Zuidgeest, advisor for the National Health Care Institute: `The objective has always been to measure once and use the data for multiple purposes. This is still what many stakeholders consider worth pursuing. Given the fact that this approach may require too many compromises on some occasions, it might be better to work with the intent to serve multiple purposes where possible, but to prioritize where necessary.’

Note: the report of this project is published in Dutch. Please feel free to reach out for more information on the contents of the project and the report.