Patient and Public Involvement in Developing Patient-Reported Outcome Measures
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COMMENTARY
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Patient and Public Involvement in Developing Patient-Reported Outcome Measures Indispensable, Desirable, Challenging Oliver Groene London School of Hygiene and Tropical Medicine, London, UK
In their article ‘Patient and public involvement in patient-reported outcome measures: evolution not revolution,’ Staniszewska et al. review the potentials for patient and public involvement (PPI) in the development, application, evaluation, and interpretation of patient-reported outcome measures (PROMs).[1] They argue that the development of PROMs should embrace more collaborative forms of PPI with patients as partners in the research process. This should ensure the acceptability, relevance, and quality of the research. While many of the messages presented in their article can be endorsed, it needs to be emphasized that PPI is not a panacea: in some areas evidence supports PPI, others relate to more innovative and perhaps challenging applications. The involvement of patients and the public has become indispensable in some areas of health services research as Staniszewska and colleagues correctly point out.[1] This includes, for example, the process of measure development, be it for measures of patient-reported outcomes, satisfaction, experience, or other measures where patients’ views on their own health or on aspects of care are sought. Evidence (and common wisdom) suggests that conducting focus groups or individual interviews with patients as a starting point for measure development leads to a better understanding of illness experience, to domain clarification, and to item generation.[2] Likewise, once a measure has been drafted, cognitive interviews are typically conducted with patients in order to assess item
comprehension, recall, processing, and verbalization of a response. This type of involvement is not particularly resource intensive and the benefits usually outweigh resource requirements. PPI is also increasingly established in other areas of health services research where patients’ inputs can help to understand the context of implementing measurement tools, clinical practice guidelines,[3] or quality improvement and patient safety interventions.[4] Patients may not be full collaborators but rather information providers, and the decisions how to interpret and act upon the contributions of patients are still with the researcher. This type of collaboration is not trivial and may cover the whole research process from identifying relevant research issues to refining how these can be assessed in a reliable and valid manner. This contribution should not be underestimated. In other areas of research, PPI is highly desirable even if the evidence base or immediate benefits are perhaps less tangible. This includes, for example, the ongoing collaboration of patients and their representatives in working groups that develop or test PROMs, which, according to Staniszewska and colleagues, could help to challenge tacit or implicit models that underp
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