What about the outcomes? A consumer point of view

I have to admit that I have always had problems with outcomes. Death is sometimes listed as a primary outcome, sometimes a secondary outcome; quality of life wanders likewise between the two, as does paindays in hospital 

As a consumer, I expect the outcomes to answer the question 'Does ...... affect ...?' , but it seems to me that current review statements of outcomes and measures do not always reflect awareness of this consumer need. I know that 'we have to live in the real world' and not every desired outcome may be measurable, but I would value help in identifying & ranking these. 

I now know that primary and secondary outcomes are chosen based on the specific review topic. Death may be considered a primary outcome when it is common for the condition and there is potential to reduce it. Alternatively, it may be secondary if it is very rare for the condition and unlikely to be affected by the intervention. As an author, I believe that there needs to be a sound rationale for each outcome chosen for a review. 

There is some research being undertaken now to try to set ‘core outcomes’ for a topic for both clinical trials and systematic reviews. In time, we may have a set list of core outcomes that would need to be measured in all trials for that topic, although additional outcomes could be added if desired, such as the possible side effects of a drug under investigation. 

Until then, is there a need for Cochrane Collaboration consumers to have some training input regarding the use of outcomes?  It may be that other consumers would welcome this kind of training, too.  

Shirley Mankell
CCNet member

Gill Gyte
CCNet Consumers' Executive Member 

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