I haven’t yet submitted a proposal to the Patient Centered Outcomes Research Institute (PCORI), but I know a few things about the process from reading and talking to colleagues who have reviewed PCORI grant proposals. One of PCORI’s goals is to promote patient engagement and shared decision-making, so a common element of PCORI-funded projects is the development of a patient decision aid. That’s a tool to help patients make decisions about what treatment is most aligned with their preferences.
Does anyone notice a problem?
In fact, there are two. Think about it: If every comparative effectiveness research (CER) project develops its own patient decision aid we’ll have (a) a ton of decision aids of varying usefulness and in potential conflict and (b) relatively few decision aids that unify the findings of a body of work.
Therefore, we need (a) some way to assess the quality of decision aids and (b) organizations that can integrate across many CER studies to produce more robust and trusted ones.
Better still, perhaps we should not be asking researchers to produce decision aids at all, but to report their findings to bodies that specialize in such things and in some consistent way to facilitate their rapid development and updating. That’s just my two cents.
As for assessing decision aid quality, I refer you to the recent paper on the subject by Natalie Joseph-Williams and colleagues.
To ensure minimum standards for the protection of patients, health care professionals, and policy makers, this study provides a preliminary set of qualifying and certification criteria for patient decision aids that could be considered for certification purposes. However, they must be considered in conjunction with evidence appraisal processes, as the proposed criteria cannot certify the accuracy of clinical content. Further work is needed to test the feasibility of the proposed criteria in order to determine the proportion of available decision aids that meet the proposed criteria, and exact scoring and rating processes need to be tested and agreed. As decision aid outcomes are measured with greater consistency, correlational analysis of decision aid quality scores with associated trial outcomes might prove informative in refining the selection process of minimum standards.
As for organizations that might develop aids that integrate the work of many studies, see, for example, Healthwise, Emmi Solutions, Health Dialog, as well as the Option Grid collaborative. I’m too green in this area to comment on the work of any of these groups, but if you know more, I’m interested.