Patients

Patients

Core outcome set (COS) development benefits greatly from the perspectives of those affected by the medical conditions the COS strives to improve. CROWN is keen to ensure that women and their families are able to participate in COS development.

What is an outcome?

When new treatments are developed for illness or medical conditions, they need to be checked to make sure they work. To do this, researchers study how patients respond by measuring their reactions. What they measure is agreed before the study begins and is called the outcome.

What are the challenges in measuring outcomes?

At the moment, different studies testing treatments for the same condition often measure different outcomes. For example, when a new blood pressure medication is being tested, one researcher may decided to look at how it causes the blood pressure to rise and fall. Another may look to see if it causes uncomfortable side effects. When the two studies are finished, the results cannot be compared or combined because the researchers have been looking at different things. This is a barrier to improving the care women receive.

What is the solution?

If all the studies looking at a particular health condition used the same outcomes, the results could be compared and combined making the best use of the research. When a set of main outcomes has been agreed for a health condition, it is called a core outcome set.

How are core outcomes agreed upon?

Deciding which outcomes should be core outcomes requires a great deal of discussion. Core outcomes have to be relevant to health professionals, but more importantly, they also have to be relevant to patients and carers. The CROWN initiative has been established to encourage the creation of core outcome sets for studies investigating women’s health conditions.

How to get involved

Check our Ongoing COS page to find out if a COS is being developed in your area of interest. If so, you may be able to get in touch with the Principal Investigator to provide input into the study. For more information on setting core outcomes see COMET’s Patient Summary.