23rd Workshop, Barcelona: “Patient Relevant Outcome Measures & Patient Reported Outcomes”
September 29th, 2015
This workshop served as a forum for discussion between all stakeholders present with the aim of reaching a common understanding of Patient Relevant Outcome Measures & Patient Reported Outcomes. It is aligned with IRDiRC, which has issued recommendations highlighting the importance of PROMs and PROs.
Making clinical studies more patient-centred means that they are designed to be as relevant as possible to patients and therefore the most efficient at generating evidence to prove that a therapy will improve lives. PROs involve the collection of data provided directly by patients regarding their health condition. This data, collected, for example, by interview, is qualitative rather than quantitative. Workshop participants discussed the challenges around PROs and PROMs, including: the cost of collecting qualitative data from patients; the issue that qualitative data expressed by patients can be subjective and more difficult to measure than quantitative data; and the fact that because rare disease populations are very small there are fewer patients who can participate in the development of PROs/ PROMs.